© 2008 Concept Systems, Inc. Delaware Cancer Consortium Continuing Progress, Identifying Potential Mary Kane, President and CEO Concept Systems, Inc. 1 © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. The Cancer Consortium and Concept Mapping – What we asked ourselves in 2001, and what we developed Process of Concept Mapping to inform, plan and track progress – Showing you some results from the start of the Consortium Looking Back, Looking Forward 2 © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. Two-phase initiative – I. Large stakeholder group issues identification: around 300 key informants throughout the State – II. Action Planning Subcommittees: priorities identified through Phase I to recommend to Governor and Legislature Leadership – Council citizens, legislators, advocates, medical professionals, community support and service providers, survivors and family members – Staff Department of Public Health, Division of Disease Prevention and Control At the beginning: The Cancer Advisory Council 3 © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. The foundation of a strong framework A way to – engage individuals in contributing to a common cause – create a shared awareness and agreement on the range of issues to be addressed both now and in the future – set priorities and establish agreement on resources – create a “road map” structure and action agenda A group approach that’s supported by well-tested technology An inclusive process that involves the voices of many points of view, and integrates them Concept Mapping 4 © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. From the participants' perspective: Participatory, democratic Provides results that are immediately useful Helps build consensus vision From the organization’s perspective: Always focused on the purpose of the initiative Flexible design and participation options Creates a framework that is multi-purpose, taking you from planning to implementation through evaluation For the Delaware Cancer Advisory Council (2001) Allowed flexibility, inclusiveness Helped to keep the Council start with a nimble but well-defined structure for the future Described priorities that guided the work that has followed 5 Why Concept Mapping? © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. 6 Planning: Planners and key issue advisors develop a focus prompt and identify participants Idea Generation: Communities of interest and expertise are identified, and respond with brainstormed ideas Structuring: Communities of interest and expertise sort and rate the results of the idea development. Representation: Analysis compute the maps, pattern matches and “go zones,” and prepare them for interpretation by communities of interest. Interpretation and Use: Strategies and tactics for action follow directly from the interpretation of the results. Pattern matches and go zones help build consensus on action. The Process © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. Who has knowledge, interest? Who can contribute relevant content? Who may be involved in using the results? Who has knowledge, interest? Who can contribute relevant content? Who may be involved in using the results? We Defined Focus and Participants A specific issue that needs to be addressed in comprehensive cancer control planning in our state is... Identify the participants 7 We collected knowledge and opinion from participants in three ways during the process: Idea Generation Sorting Rating Over 300 people were involved total We collected knowledge and opinion from participants in three ways during the process: Idea Generation Sorting Rating Over 300 people were involved total Develop a focus © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. We Gathered and Organized Knowledge and Opinion Generate Ideas Identify the participants Develop a focus 8 Individual Sorting by each participant Ratings on Importance Feasibility Individual Sorting by each participant Ratings on Importance Feasibility Some extracted statements: Legislation/ incentives for insurance companies to cover prevention, screening and tobacco cessation. Increase access to palliative care and pain management. Invest in portable or mobile screening programs, at work or in neighborhoods. Educate physicians to recognize symptoms and encourage/include screening in routine physicals and well-child visits. Educate the public on the benefits of early diagnosis and treatment, and appropriate diagnostic tests. Increase the tobacco excise tax and put the money in a fund earmarked for health. Increase awareness of toxic chemical use in lawn/garden care. Fund a comprehensive study of ambient air to determine airborne carcinogens. Some extracted statements: Legislation/ incentives for insurance companies to cover prevention, screening and tobacco cessation. Increase access to palliative care and pain management. Invest in portable or mobile screening programs, at work or in neighborhoods. Educate physicians to recognize symptoms and encourage/include screening in routine physicals and well-child visits. Educate the public on the benefits of early diagnosis and treatment, and appropriate diagnostic tests. Increase the tobacco excise tax and put the money in a fund earmarked for health. Increase awareness of toxic chemical use in lawn/garden care. Fund a comprehensive study of ambient air to determine airborne carcinogens. Structure Ideas © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. Produced, Enriched and Used the Results Interpret Maps Generate Ideas Identify the participants Develop a focus Structure Ideas 9 Compute Maps Use Maps © 2010 Concept Systems, Inc. Access to Care Insurance & Funding Leadership/Accountability Medical Community Action Public Awareness & Education Tobacco Control Cancer Information Systems Environmental Carcinogen Exposure/Assess ment Research & Data Analysis

© 2008 Concept Systems, Inc. On a concept map Conceptually different ideas are further apart 10 conceptually similar ideas are closer. © 2010 Concept Systems, Inc. Fund a comprehensive study of ambient air to determine airborne carcinogens. (97) Partner with industries to identify causes and create solutions to cancer problem. (53) Implement environmental strategies that are evidence- based. (104) Fund a comprehensive study of ambient air to determine airborne carcinogens. (97) Partner with industries to identify causes and create solutions to cancer problem. (53) Implement environmental strategies that are evidence- based. (104) Legislation/ incentives for insurance companies to cover prevention, screening and tobacco cessation. (19) Investigate the role of secondary insurance to cover services not covered by primary insurance. (113) Establish programs to assist patients with the cost of drugs and treatments. (76) Legislation/ incentives for insurance companies to cover prevention, screening and tobacco cessation. (19) Investigate the role of secondary insurance to cover services not covered by primary insurance. (113) Establish programs to assist patients with the cost of drugs and treatments. (76)

© 2008 Concept Systems, Inc. Cluster Label (F) An Example 11 © 2010 Concept Systems, Inc Standardize and centralize the collection and dissemination of data on cancer incidence in DE, including occupational history, demographics and exposures. Budgetary priority. (10) Find out why energetic robust children get cancer. (17) Increase high quality causative factor and clinical trial research. (26) Look at whether the high cancer rate is related to an aging population. (27) Use miscarriage/ birth defect case data to look at the effects of carcinogenic exposure. (29) Determine how many deaths from the 6 leading cancers in DE were avoidable. (30) Determine the effect of the Cancer Society on recidivism rates in DE. (32) Consider the potential years of life lost to certain types of cancer when setting state priorities. (33) Conduct a study to determine the impact of the use and abuse of alcohol. (48) Address the high incidence and death rate for African Americans. (54) Standardize specific, accurate reporting of the cause of death for cancer patients. (60) Examine how the high incidence of HIV and other sexually transmitted diseases impacts the cancer rate (sarcomas, cervical) (64) Use registry data to create a geographic map of cancer incidence (by type), including the risk factors and causes associated with each area. (65) Focus on survival rates due to early detection and advancements in treatment. (69) Research cancer incidence and cure rates for children (18 yrs. and younger). (81) Determine why DE cancer rate is so high. (88)

© 2008 Concept Systems, Inc. …so that many concepts can be considered in a shared structure Participants decide where the details belong… 12 © 2010 Concept Systems, Inc Environmental Carcinogen Exposure/Assessment Access to Care Insurance & Funding Leadership/Accountability Medical Community Action Education Collaboration Quality / Best Practices Public Awareness & Education Tobacco Control Cancer Information Systems Research & Data Analysis

© 2008 Concept Systems, Inc. Disparities 13 Topics: Basis for the subcommittee assignments. © 2010 Concept Systems, Inc. Access to Care Insurance & Funding Leadership/Accountability Quality Cancer Care Public Awareness & Education Tobacco and Other Risk Factors Cancer Information Systems Environment Research & Data Analysis Crosscutting Leadership/Accountability: Council’s responsibility. Workplace/ Workforce Early Detection/ Prevention

© 2008 Concept Systems, Inc. Standardize and centralize the collection and dissemination of data on cancer incidence in DE, including occupational history, demographics and exposures. Budgetary priority. (10) Determine how many deaths from the 6 leading cancers in DE were avoidable. (30) Address the high incidence and death rate for African Americans. (54) Standardize specific, accurate reporting of the cause of death for cancer patients. (60) Use registry data to create a geographic map of cancer incidence (by type), including the risk factors and causes associated with each area. (65) Focus on survival rates due to early detection and advancements in treatment. (69) Research cancer incidence and cure rates for children (18 yrs. and younger). (81) Research & Data Analysis 5 Priorities: Basis for the subcommittee charges.

© 2008 Concept Systems, Inc. Strategies and Tools – Built a Common Conceptual Framework and Determine Priorities: Concept Mapping – Confirmed with agency, volunteers and community: meetings and public information – Got additional input: public comment, personal stories, research – Got down to work: Action Subcommittees – Took new action together: Consortium – Produced the plan: The first four year plan--The Green Book – Considered accountability: Continual assessment, program evalaution – Extended the Consortium’s commitment -- The Purple Book Using the Map Effectively 15 © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. Strategies and Tools – Recognize progress, change in context and status: retreat and ongoing Consortium work – Consider what we need to know now, from multiple perspectives: planning for input – Ensure inclusive awareness and participation – Begin now to construct a new road map: concept mapping – Start using the future-focused road map by Fall 2010 Now 16 © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. CSI is a woman owned small business 15 year history of working to engage communities for group consensus and decisions, with rigor and sensitivity Over100 initiatives in the Federal government and state government for planning, implementation, communication, and evaluation Some recent and current relationships – DHHS Office on Women’s Health – NIH Office on Behavioral and Social Sciences Research – Mental Health America Concept Systems, Inc. 17 © 2010 Concept Systems, Inc.

© 2008 Concept Systems, Inc. If you have additional questions or would like more information, please contact: Concept Systems, Inc. 136 East State Street Ithaca, New York Phone: (607) Thank You… 18 © 2010 Concept Systems, Inc.