05/09/081 Building Momentum and Expanding Your Program's Partnerships - Inclusion Walter L. Shepherd Director NC Comprehensive Cancer Program & Executive Director NC Advisory Committee on Cancer Coordination & Control

Why I'm Here? While I'm Here

Two Organizational Models for CCC Partnerships Prescriptive Representation is prescribed, typically through enabling legislation Collaborative Representation is selected/elected from among stakeholders

Advantages Prescriptive Legislative-connection Ensures representation of specific organizations Reduces rivalry among stakeholders Collaborative Broad representation Can ensure greater diversity Can ensure network for implementation

Almost 50 years to get it right….. t t 50 Years of Cancer Prevention & Control Planning 1957 The Commission to Study the Cause and Control of Cancer in North Carolina established by the Legislature The Co1957 The Commission to Study the Cause and Control of Cancer in North Carolina established by the Legislature The Commission to Study the Cause and Control of Cancer in North Carolina made a permanent study commission Governor’s Commission to Study the Cause and Control of Cancer convened Statewide Coalition for Cervical Cancer Control created Study Commission on Cancer Prevention and Control created by the Legislature The North Carolina Advisory Committee on Cancer Coordination and Control formally established through legislative action Funding provided by CDC to North Carolina as one of fivestates and one tribal health boards to pilot national comprehensive cancer control NC Cancer Partnership created

North Carolina 1993 Prescriptive Long history of government involvement/participation – since 1957 Major legislative buy-in Key legislators involved & moved policy agenda 33 Appointed Individuals Evolved into a “Small Table” environment Participants & Spectators

North Carolina “In a Rut” Original members rotated off Two 5-year Plans completed 3 rd 5-Year Plan was in-process Interest/participation had diminished NC CCP was “broken” Participants & Spectators No one sure what this process was all about No accountability to stakeholders

North Carolina April, 2006 “The Revolution” Created the NC Cancer Partnership Initiated the “Big Table” philosophy Everyone Is Welcome - Inclusion Abandoned the 5-Year Plan Process Re-defined what’s important It’s all about Survivorship Partnerships must be made; they don’t just happen Partnerships must be worked everyday

Collaborating to make a difference in the lives of North Carolinians with cancer, their families, and their communities. An opportunity for every Cancer stakeholder to have an opportunity to participate and contribute.

05/09/0810 NC Advisory Committee on Cancer Coordination & Control 34 Appointed Members Executive Committee Chair & Vice Chair Subcommittee Chairs & Associates Subcommittees Care Early Detection Prevention Evaluation Legislative/Education

05/09/0811 NC Advisory Committee on Cancer Coordination & Control 34 Appointed Members Executive Committee Chair & Vice Chair Subcommittee Chairs & Associates Subcommittees Care Early Detection Prevention Evaluation Legislative/Education NC Cancer Partnership Open Membership Steering Committee Members Workgroup Leaders Cancer Workgroups 19 Groups Regional Cancer Partnerships 6 Regions Present

Work Groups Created Breast Cancer Gynecological Cancers Childhood Cancers Colorectal Cancer Cancer & Young Adults Lung Cancer Prostate Cancer Skin Cancer Other Cancers Clinical Trials Disparity Palliative Care/Pain Survivorship Worksite Cancer Initiatives Cancer & the Environment Personal Behaviors Genomics Patient Navigation

05/09/0813 Work Groups ~12 – 15 Members Representative – Geographic, Demographic, Clinical/Non-Clinical Establish Common Ground Develop Timeline for Activities Survey/Research the Issues/Problems Determine Existing Activities/Resources Coordinate with Other Work Groups Develop Specific Goals, Objectives, Strategies & Evaluation Measures Determine Resources Required Transmit Report to Advisory Committee & Subcommittees Assist with Implementation Review Evaluation Results & Outcomes Revise Goals, Objectives, Strategies

Cherokee Graham Clay Macon Jackson Swain Transylvania Henderson Polk Haywood Madison Buncombe McDowell Yancey Mitchell Avery Watauga Rutherford Cleveland Gaston Lincoln Catawba Burke Caldwell Ashe Wilkes Mecklenburg Cabarrus Union Anson Alleghany Surry Yadkin Alexander Iredell Rowan Davie Stokes Forsyth Stanly Richmond Scotland Davidson Rockingham Guilford Randolph Montgomery Moore Lee Caswell Alamance Orange Durham Chatham Wake Hoke Robeson Cumberland Sampson Bladen Columbus Brunswick New Hanover Pender Onslow Carteret Jones Craven Pamlico Duplin Harnett Johnston Person Granville Vance Warren Franklin Nash Wilson Wayne Pitt Lenoir Greene Edgecombe Martin Beaufort Washington Tyrrell Dare Hyde Halifax Northampton Bertie Hertford Gates Chowan Perquimans Currituck CamdenPasquotank ACOS CoC Approved Facility Medical School / Major Academic Medical Center NC Cancer Partnership Regions Western South Central Southeastern North CentralCentral Northeastern Non-CoC Facility

The assurance that the views, perspectives, and needs of all affected communities are included and involved in meaningful manner in the planning/implementation process. Inclusion

Enhance credibility Implement program change Advocate program changes Fund, authorize, expand programs From Tom Chapel, May 14, 2008 Who Do We Need Most?

Steps Taken for Inclusion Give All Stakeholders a Voice...but Start by Reminding Everyone What It's All About Answer the Question: “What's in It for Me?” It’s Not the State’s Plan….It’s the People’s Plan. Perspective: Focus on a Few vs. Anything Goes My Plan is Your Plan.; Your Plan is My Plan A “Living Plan” Should/Can Be Changed as Necessary. Formal Adoption of Plan by Organizations & Individuals. Develop Specific Action Plan with Organizations. Formal Connection with Major and Minor Organizations. Get the Plan “Out There” per month, visits, talks, events Listen, Act, Report Connect the Dots CCCP Can Make It Happen – “We're Like Switzerland” Assume Leadership of Efforts Where There's a Void Build Capacity Where It's Needed Eliminate Duplication & Share Resources Monitor Participation/Participants Don't Be Afraid to Stick Your Neck Out

Some Results from Inclusion NC Survivorship Summit NC Cancer Centers’ Collaborative NC Oncology Navigator Association NC Cancer Clinical Trials' Clearinghouse Pilot Projects/Regions wth Early Adopters Visits to all CoC (& other) Centers Incubate and/or Help Create New Organizations Help Established Organizations Renew Their Efforts Adoption of Plan by Funding Organizations as Part of RFA Process Customized Cancer Plan 19 Work Groups – typically >50% Members Are Survivors/Advocates NC Medical Journal Special Issue on Cancer – circ. 36,000 Community-Based Organizations' Training Initiative

PARTNERSHIPS American Cancer Society NCI Cancer Information Service Comprehensive Cancer Collaborative of NC (CPCRN) NCI-Designated Comprehensive Cancer Centers (3) American College Surgeons – Commission on Cancer (38) Non-approved Cancer Centers (6) NC Academy of Family Physicians NC Medical Society Old North State Medical Society NC Hospital Association NC Oncology Society Komen for the Cure University of North Carolina Duke University NC Cancer Centers' Collaboration (sponsored) NC Oncology Navigator Association (sponsored) NC Cancer Clinical Trials' Clearinghouse (sponsored) Plus many other state & local organizations and agencies

05/09/0820 “The Vision” That North Carolina’s collective effort will enable the state to become the national leader in responding to the many challenges associated with cancer, including: The promotion of healthy lifestyles & preventive behaviors The provision of universal access to screening & early detection resources Patient- & family-centered care that is accessible & affordable A cancer survivorship approach that is a collaboration between the patient, the family, the community & the health care system The elimination of all disparities related to access to all resources & services

Major Themes in the NC Cancer Plan Site Specific Healthy Behaviors – Eating Smart, Moving More; Tobacco Use; Infectious Agents; Alcohol Use Cancer & the Environment Genetics Clinical Trials Palliative Care – Pain; Hospice; End of Life Care Data/Surveillance Professional Education & Awareness Survivorship Access to Services Public Awareness Cost & Financing

Major Activities in the NC Cancer Plan Making Cancer Survivorship the Centerpiece Creating & Enhancing Partnerships – Local, Regional, Statewide Eliminating Disparities of All Types Making the Public More Aware & Engaged Enhancing Professional Education & Involvement Ensuring an Appropriate Workforce – Quantity, Quality, Distribution Ensuring Access to All Increasing Funding & Resources Increasing Data/Surveillance Supporting Research & New Technology Determining & Implementing New Policies