mary kane presentation
DESCRIPTION
2nd Annual DCC RetreatTRANSCRIPT
© 2008 Concept Systems, Inc.
Delaware Cancer ConsortiumContinuing Progress, Identifying Potential
Mary Kane, President and CEOConcept 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 evaluationFor 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
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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?
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
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We collected knowledge and opinion from participants in three ways during the process:Idea GenerationSortingRatingOver 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
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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.
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
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Compute Maps
Use Maps
© 2010 Concept Systems, Inc.
Access to Care
Insurance & Funding
Leadership/Accountability
Medical Community Action
Public Awareness & Education
Tobacco ControlCancer
Information
SystemsEnvironmental
Carcinogen
Exposure/Assess
ment
Research & Data Analysis
© 2008 Concept Systems, Inc.
On a concept map
Conceptually different ideas are further apart
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conceptually similar ideas are closer.
© 2010 Concept Systems, Inc.
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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.
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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.
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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
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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/Preventio
n
© 2008 Concept Systems, Inc.
5432
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Fea
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Importance
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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
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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 StreetIthaca, New York 14850Phone: (607) 272-1206www.conceptsystems.com
Thank You…
18© 2010 Concept Systems, Inc.