2012 Texas Cancer Plan Draft Outline 7/1/ Texas Cancer Plan. DRAFT Outline

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1 2012 Texas Cancer Plan DRAFT Outline 1

2 Table of Contents (DRAFT, subject to change) Please note that several sections are currently under development Texas Cancer Plan Draft Outline 7/1/2011 Executive Summary Introduction Purpose, Cancer Burden in Texas Process, Principles Partners Overarching Focus Areas: Disparities, Children and Youth, Data Disparities Race/Ethnicity Income and Uninsured Populations Age Geographic Area Children and Youth Data Acquisition and Utilization Definitions: Goals, Objectives, Strategic Actions Goals, Objectives, and Strategic Actions for Cancer Prevention and Control Primary Prevention and Risk Reduction Screening and Early Detection Diagnosis, Treatment, and Palliation Quality of Life and Survivorship Infrastructure Research and Commercialization Note: Each section will open with a section definition as well as a brief 1-2 page introduction. Links to additional resources may also be included in each section. (under development) Call to Action Appendices and References Executive Summary (under development) Introduction (DRAFT, subject to change) Background The Texas Cancer Plan (Plan) aims to reduce the cancer burden across the state and improve the lives of all Texans. As the statewide blueprint for cancer prevention and control, the Plan identifies the challenges and issues that affect our state and presents a set of goals, objectives, and strategic actions to help inform and guide communities and partners in the fight against cancer. The Plan is not an all inclusive list of goals, objectives, and strategic actions that address all areas of the cancer spectrum. Rather, the intent of the Plan is to provide a coordinated, prioritized, and actionable framework that will help guide efforts to fight the human and economic burden of cancer in Texas. The Plan is developed with input provided by 2

3 organizations and institutions, community leaders, planners, coalition members, cancer survivors, and family and friends affected by cancer from across the state. By state statute, the Cancer Prevention and Research Institute (CPRIT) is charged with the responsibility of facilitating the development of the Plan and supporting its implementation. However, the overall outcome and success of the Plan will depend on the cooperation, collaboration and resources of many stakeholders from across the state. Opportunities for Stakeholder Input CPRIT, in collaboration with members of the Texas Cancer Plan Revision Work Group, is soliciting feedback regarding the next revision of the Texas Cancer Plan (Plan). The final version of the Plan is slated to be finalized in January There are several ways for stakeholders, including members of the public, to participate in the Texas Cancer Plan revision process. Opportunities for input are posted on CPRIT s Texas Cancer Plan webpage, located at Process and Timeline Oct.2010 Nov.2010 Jan Feb Mar Apr May 2011 Summer 2011 Sep Oct Dec Jan CPRIT Call for Nominations for Work Group Members Work Group Members Announced First Work Group Meeting Work Group Conference Calls Second Work Group Meeting Data collection and Work Group Conference Calls Third Work Group Meeting Comment Period: Opportunity for Stakeholder Input Fourth Work Group Meeting Fifth Work Group Meeting, Present Draft Plan to CPRIT Oversight Committee Finalize Revisions to the Texas Cancer Plan Release Revised Texas Cancer Plan About CPRIT In 2007, Texas voters overwhelmingly approved a constitutional amendment establishing the Cancer Prevention and Research Institute of Texas (CPRIT) and dedicating up to $3 billion to invest in groundbreaking cancer research and prevention programs and services in Texas. Passionately committed to the war on cancer, CPRIT focuses on expediting the innovation and commercialization of cancer research in turn increasing the potential for a medical or scientific breakthrough and enhancing access to evidence-based prevention programs and services. More information about CPRIT can be found by visiting 3

4 Texas Cancer Plan Revision Work Group CPRIT would like to thank the members of the Texas Cancer Plan revision work group for generously donating their time and expertise in contributing to this plan. These individuals include: Susan Anderson Texas Tech University Health Sciences Center David Auzenne Department of State Health Services Lewis Foxhall, MD MD Anderson Cancer Center Earnesto Gomez, PH.D. CentroMed Martin Ornelas Coastal Bend Rural Health Partnership Karen Torges American Cancer Society Armin Weinberg, Ph.D. Baylor College of Medicine Deanna M. Hoelscher, Ph.D., R.D., L.D., C.N.S UT Health Science Center at Houston Philip Huang, MD, MPH Austin/Travis Co. Health & Human Services Department Andy Miller, MHSE, CHES Lance Armstrong Foundation Catherine Oliveros, DrPH, MPH Susan G. Komen for the Cure Carol Rice, PhD, RN Texas AgriLife Extension Service Deborah Vollmer Dahlke TX Clinical Trial Network Melanie Williams, Ph.D. Texas Department of State Health Services Rick Schwertfeger, M.A.T. Texas Department of State Health Services Overarching Focus Areas: Disparities, Children and Youth, Data (DRAFT, subject to change) The following issues are threaded throughout the continuum of cancer prevention and control and are therefore specifically highlighted in this section because of their significant contribution to the cancer prevention and control landscape of Texas. These unique issues present challenges as well as opportunities and should be considered when reviewing and implementing any section included in this plan. Cross cutting issued identified in this Plan include: Disparities Some segments of the Texas population are affected by cancer to a greater degree than others. For example, some racial and ethnic groups are more likely than others to have cancer discovered at a later stage, leading to higher mortality rates. Eliminating cancer disparities due 4

5 to factors such as socioeconomic status (income, education level, insurance coverage, etc.), race/ethnicity, residence, and sex is a cross cutting aim of the Plan. Defining the exact causes of cancer disparities in these groups is complex. The factors that contribute to disparities are often interrelated issues such as socioeconomic status, culture, and health system factors. According to the American Cancer Society, disparities predominantly occur from inequities in work, wealth, income, education, housing, and overall standard of living, as well as social barriers to accessing high-quality cancer prevention, control, and treatment services. Therefore, it is imperative that planners, policy makers, providers, advocates, and others consider these factors in their efforts to lessen the burden of cancer in Texas. Race/Ethnicity Cancer incidence and mortality rates vary by race and ethnicity (Figure I). Further variation is seen when reviewing rates by cancer site. Overall, blacks have cancer incidence and mortality rates that exceed those of whites and other racial/ethnic groups. The greatest differences are seen in men, where black males have an incidence rate 1.2 times higher and a mortality rate 1.4 times higher than non-hispanic whites. Disparities become more apparent among female counterparts when looking at specific cancer sites. For example, Hispanic women have higher incidence rates of cervical cancer compared with other racial/ethnic groups; however, black women suffer higher mortality rates for cervical cancer than other racial/ethnic groups. Figure I - Overall Cancer Incidence ( ) and Mortality Rates ( ) by Race/Ethnicity, Texas Age-Adjusted Rate per 100, Incidence Rate Mortality Rate Income/Uninsured populations Low-income populations face financial barriers to accessing cancer prevention and treatment resources. During 2008, 15 percent of the people in Texas were below poverty level, compared to the national rate of 13 percent. The median household income in Texas in 2008 was $50,049. In addition, Texas has the highest percentage of uninsured population of any state, estimated at 27 percent in 2006, or 5,854,743 people. 5

6 Age The risk of developing cancer increases with age. Over 95 percent of cancer deaths occur among Texans who are age 45 years or older. In Texas, as in the Nation, the growing number of older adults will increase the number of people affected by cancer, thereby making present-day prevention efforts all the more necessary. Geographic Area Cancer incidence and mortality rates also vary by geographic area. The reason for these differences are likely due to variation in cancer risk factors (e.g., tobacco use) and population demographics of an area, including age, racial/ethnic makeup, income, and insurance coverage. Rural Texans are an especially underserved population. These Texans tend to be older, have less income, and are less likely to have insurance than their urban counterparts. When considering total incidence and mortality in the state, rural counties in Texas share a greater cancer burden than their urban counterparts. Residents of rural areas often have less contact and fewer visits with physicians and, in general, lower levels of available preventative care. Additional information on cancer disparities, including statistics, can be found through the following resources: Texas Cancer Registry [will include link] ACS Facts and Figures [will include link] Children and Youth Approximately 900 Texas children ages 0-14 were diagnosed with cancer in Cancer is manifested differently in children, the most common cancer sites being blood and bone marrow, brain, lymph nodes, nervous system, kidneys, and soft tissues. About 9,700 Texas children will be diagnosed with cancer over the next decade, causing financial, physical, and psychosocial 6

7 challenges for an equal number of Texas families, both during treatment as well as the years of adjustment that follow. Children and youth also play an important role in cancer prevention. Interventions for prevention of cancers related to ultraviolet radiation, tobacco, obesity, and certain viruses should begin at an early stage to minimize risk for developing cancer later in life. Data Acquisition and Utilization (under development) Definitions: Goals, Objectives, Strategic Actions The following definitions were adopted by the Texas Cancer Plan revision work group to be used as a guide in drafting the goals, objectives, and strategic actions included in this document: GOALS are broad and lofty statements of general purpose to guide planning. These should be few in number and focus on aspects of highest importance to the Plan. OBJECTIVES offer specific and measurable milestones. Baselines will be established where possible; however, data may not always be available to set a starting baseline. STRATEGIC ACTIONS are the activities that could and should be undertaken to accomplish the goals and objectives of the Plan. This is not intended to be a comprehensive list of all possible strategic actions. Rather is a list of focused, specific, evidence-based (where possible), and action-oriented strategies that could have a significant impact on accomplishing goals of the Plan if implemented. 7

8 Goals, Objectives, and Strategic Actions for Cancer Prevention and Control (DRAFT, subject to change) Note: Each section (6 total) will open with a section definition as well as a brief 1-2 page introduction. Links to additional resources and references may also be included in each section. (definitions and introductions are currently under development) I. Primary Prevention and Risk Reduction 1.0 Reduce incidence and mortality from lung cancer and other tobacco related cancers 1.1 Decrease the percentage of youth, adolescents and young adults who report smoking cigarettes or use smokeless tobacco on one or more of the previous 30 days 1.2 Decrease the percentage of adults who report smoking cigarettes or use smokeless tobacco on one or more of the previous 30 days 1. Implement policy, systems and environmental change and evidence-based strategies that decrease tobacco use and initiation and exposure to secondhand smoke Strategies may include: Conducting youth and adult focused counter-marketing campaigns statewide Increasing prices of cigarettes and other tobacco products Expanding access to and promoting use of comprehensive tobacco cessation programs and services Promoting and implementing tobacco-free environment policies 2. Advocate for and dedicate consistent and reliable funding for tobacco control at the level recommended by the CDC. 2.0 Reduce cancer risk related to obesity 1.3 Reduce exposure to secondhand smoke 2.1 Increase the percentage of youth who are at a healthy weight 2.2 Increase the percentage of adults who are at a healthy weight 3. Improve health professional knowledge, practice behaviors and system support related to increasing provision of or referral to tobacco cessation services. 4. Conduct messaging campaigns statewide about the dangers of second-hand smoke. 1. Implement policy, systems and environmental change and evidence-based strategies that reduce the risk of cancer related to obesity. Strategies may include: Implementing evidence-based school and youth community programs that promote healthy weight Implementing evidence-based worksite and adult community programs that promote healthy weight Conducting awareness campaigns statewide on the link between obesity and risk of cancer (adult) 2. Advocate for and dedicate consistent and reliable funding for implementation of evidence-based obesity control programs and practices at levels recommended by Healthy People Improve health professional knowledge, practice behaviors and system support related to increasing provision of or referral to counseling and delivery of services that promote obesity reduction and control. 8

9 3.0 Increase adoption of evidence-based nutrition behaviors and physical activity behaviors shown to reduce cancer risk 4.0 Reduce the incidence and mortality of skin cancers resulting from solar and artificial ultraviolet radiation 5.0 Reduce the incidence of cervical, oral, liver and other cancers associated with infectious diseases 3.1 Increase the percentage of youth who follow evidence-based physical activity guidelines (at least 60 min of physical activity, 5 days a week) 3.2 Increase the percentage of adults who follow evidence-based physical activity guidelines (at least 30 min of physical activity, 5 days a week) 3.3 Increase the percentage of youth and adults who follow evidencebased nutrition guidelines (at least 5 fruits and vegetables a day) 4.1 Increase percentage of youth and adults who practice skin cancer prevention behaviors 5.1 Increase the percentage of youth and young adults who have completed the recommended HPV vaccine series according to national guidelines 5.2 Increase the percentage of people in populations at increased risk who have had Hepatitis B vaccine 1. Implement policy, systems and environmental change and evidence-based strategies that increase the adoption of nutrition and physical activity behaviors. Strategies may include: Implementing evidence-based school and youth community programs that promote good nutrition and physical activity Implementing evidence-based worksite and adult community programs that promote good nutrition and physical activity Conducting awareness campaigns statewide on the link between nutrition and physical activity and risk of cancer (adult). 2. Advocate for and dedicate consistent and reliable funding for implementation of evidence based nutrition and physical activity recommendations shown to reduce cancer risk. 3. Improve health professional knowledge, practice behaviors and system support related to increasing provision of or referral to counseling and services that promote nutrition and physical activity guidelines. 1. Implement policy, systems and environmental change and evidence-based strategies that increase the adoption of ultraviolet radiation safety behaviors. Strategies may include: Advocating for eliminating the use of tanning beds Implementing evidence-based school and community programs that promote sun safety Conducting awareness campaigns statewide on the link between solar radiation and risk of skin cancer (settings such as parks, schools, daycare centers, worksites, and beaches). 1. Implement policy, systems and environmental change and evidence-based strategies that address infectious disease causes related to cancer. Strategies may include: Conducting a statewide awareness campaign on the link between infectious diseases and cancer risk Advocating to make Immtrac, the immunization registry, an opt-out program and using Immtrac for adults Implementing evidence-based programs that promote immunization of high risk adults against Hepatitis B and teens and pre-teens of both sexes against HPV 5.3 Increase awareness and adoption of CDC recommendations for 2. Promote demonstration projects and research on screening for liver cancer. 3. Improve health professional knowledge, practice behaviors and system support related to increasing 9

10 hepatitis screening provision of or referral to immunizations against HPV and Hepatitis B 6.0 Reduce the incidence of cancers related to environmental carcinogens II. Screening and Early Detection 7.0 Increase proportion of early stage diagnosis of breast cancer through screening and early detection to reduce deaths from breast cancer 6.1 Increase the number of people covered by evidence-based occupational policies that reduce exposure to environmental carcinogens 6.2 Increase the number of people covered by evidence-based community policies that reduce exposure to environmental carcinogens 7.1 Increase proportion of women who receive breast cancer screening according to national guidelines 7.2 Reduce the proportion of late stage diagnosis of breast cancer 1. Advocate for and dedicate consistent and reliable funding for evidence based epidemiologic and environmental surveillance and research -(e.g., workplace, in utero and childhood, multigenerational exposures) 2. Advocate for evidence based policies, programs and system changes to increase transparency and information sharing among the public, researchers, regulatory agencies and industry about environmental carcinogens 3. Advocate for system changes and training programs to prevent workplace exposure to carcinogens 1. Increase and improve access to care by reducing structural and financial barriers. Strategies may include: increasing hours of operation increasing mobile and other alternative screening opportunities increasing access to insurance coverage promoting investments in and increase availability of patient navigation services 2. Using evidence-based interventions, promote screening guidelines and awareness of insurance coverage options, including to immigrant populations. 3. Promote the provision of screening services through medical homes, accountable- care organizations and other emerging models of healthcare delivery. 4. Increase availability and utilization of electronic medical records and implementation of clinical system changes to increase utilization of evidence-based cancer screening. 5. Improve health professional knowledge, practice behaviors, and system support related to improving service delivery. 10

11 8.0 Reduce deaths and number of new cases of cervical cancer through screening and early detection 8.1 Increase proportion of women who receive cervical cancer screening according to national guidelines 8.2 Reduce the proportion of late stage diagnosis of cervical cancer 1. Increase and improve access to care by reducing structural and financial barriers. Strategies may include: increasing hours of operation increasing mobile and other alternative screening opportunities increasing access to insurance coverage promoting investments in and increase availability of patient navigation services 2. Using evidence-based interventions, promote screening guidelines and awareness of insurance coverage options, including to immigrant populations. 3. Promote the provision of screening services through medical homes, accountable-care organizations and other emerging models of healthcare delivery. 4. Increase availability and utilization of electronic medical records and implementation of clinical system changes to increase utilization of evidence-based cancer screening. 5. Improve health professional knowledge, practice behaviors, and system support related to improving service delivery. 9.0 Reduce the number of deaths and new cases of colon and rectum cancer through screening and early detection 9.1 Increase proportion of adults who receive colon and rectum cancer screening according to national guidelines 9.2 Reduce the proportion of late stage diagnosis of colon and rectum cancer 6. Ensure appropriate follow-up for women who receive abnormal cervical cancer screening results. 1. Increase and improve access to care by reducing structural and financial barriers. Strategies may include: increasing hours of operation increasing mobile and other alternative screening opportunities increasing access to insurance coverage promoting investments in and increase availability of patient navigation services 2. Using evidence-based interventions, promote screening guidelines and awareness of insurance coverage options, including to immigrant populations. 3. Promote the provision of screening services through medical homes, accountable- care organizations and other emerging models of healthcare delivery. 4. Increase availability and utilization of electronic medical records and implementation of clinical system changes to increase utilization of evidence-based cancer screening. 11

12 5. Improve health professional knowledge, practice behaviors, and system support related to improving service delivery. 6. Develop, evaluate, and promote new technologies that will increase public demand and utilization of screening Develop and implement screening and early detection methods for other cancers 10.1 Reduce the number of individuals who are tested for prostate cancer without informed decision making and who do not meet eligibility recommendations 10.2 Develop and implement more effective screening and early detection methods that can differentiate between aggressive and indolent cancers for which there is no benefit from treatment 7. Expand capacity for colorectal cancer screening and follow up. 1. Promote evaluation of emerging screening methodologies that have an evidence base. 2. Promote demonstration projects and continued study of emerging screening technologies. 3. Increase awareness of and implementation of new evidence-based screening and early detection methods into routine practice. 4. Offer informed decision making to eligible individuals considering screening and early detection tests with mixed evidence of effectiveness such as PSA testing for prostate cancer 10.3 Develop and implement novel methods for screening and early detection including imaging technologies, genomics and proteomics III. Diagnosis, Treatment, and Palliation 11.0 Increase timely access to quality cancer diagnostic, treatment and palliation services for all Texans 11.1 Support awareness, education and advocacy efforts aimed at increasing the number of patients who receive high quality care 11.2 Increase timely access and utilization to care for individuals 1. Develop, implement and evaluate public and health professional education and advocacy plans to support adoption and practice of existing standards for quality care. 2. Increase training for and utilization of patient navigators and community health care workers in both clinic and community settings across the continuum of cancer care 12

13 who are uninsured or do not qualify for financial assistance programs 3. Develop, implement and evaluate education and advocacy plans to support an increase in the number of hospitals and treatment facilities with Commission on Cancer accreditation in underserved areas of Texas Increase opportunities to access and participate in cancer research and clinical trials 12.1 Increase awareness, participation and retention of eligible patients in cancer clinical trials including those from diverse and underrepresented populations 12.2 Increase advocate/community involvement at every stage of the clinical trial process: design, implementation and communication of clinical trial results 4. Gather data and report on patient/survivor experiences with diagnosis, treatment and post-treatment care plans. 1. Expand geographic (community) reach of clinical trials to provide patients and physicians local access to novel therapeutics and cancer treatments 2. Develop, implement and evaluate education and advocacy plans to increase public and professional awareness, knowledge and adoption of clinical trials, focusing on the use of tissue donation opportunities and challenges of personalized medicine 3. Develop, implement and evaluate education and advocacy plans to increase infrastructure resources for clinical trials, focusing on: systems and technologies to support personalized medicine use of Electronic Medical Records and Health Information exchanges 4. Encourage researchers applying for federal, state or other funds to demonstrate in their protocols methods and measures to ensure meaningful community participation throughout the clinical trial process. 5. Build community education and community capacity for understanding and supporting clinical research, including the dissemination of results to community members. IV. Quality of Life and Survivorship 13.0 Improve quality of life by promoting overall health and wellbeing of people affected by cancer 13.1 Increase availability of and access to survivorship programs and services designed to improve quality of life 1. Identify essential elements in core survivorship programs and services by participating in ongoing state and national activities. 2. Encourage the incorporation of survivorship curricula that includes cultural competency and communication skills into professional education and training programs,. 3. Develop and enhance patient navigation systems and pathways based on best practices to ensure optimum care for all phases of cancer survivorship. 13

14 4. Promote collaboration among organizations to identify and implement evidence-based programs with appropriate adaptations for the needs of priority populations Maximize time of survival by increasing availability and access to evidencebased or recommended services V. Infrastructure 15.0 Develop or strengthen the infrastructure supporting the delivery of the most appropriate cancer prevention and care services 14.1 Increase number of cancer survivors who receive a written summary of treatment and care plan 14.2 Increase number of survivors who receive information on end-of-life issues and make informed decisions based on this information 14.3 Increase number of survivors who have their pain and symptoms appropriately managed 15.1 Increase the number of quality, accessible, and affordable facilities, equipment, technology and cancer prevention and care services 15.2 Increase the number of well trained health professionals serving rural and other health professionals shortage areas 15.3 Establish systems to accelerate the adoption of research into practice across the cancer control spectrum 1. Assess compliance with survivorship policies, programs, and activities relative to the recommendations from the IOM. 2. Promote use of standards for delivery of survivor services developed by national organizations (e.g. NHPCO, CAPC, ACOS, etc.) 3. Develop and evaluate curricula based on the IOM recommendations that target health professions students, community health workers, and health professionals. 4. Identify, tailor, and train health professions students, community health workers, and health professionals using established curricula. 1. Advocate for and dedicate consistent and reliable funding to strengthen the infrastructure supporting the collection of quality cancer data and delivery of quality cancer prevention and care. 2. Build leadership and partnerships in underserved communities to provide and promote systems and social policy changes supporting cancer prevention activities. 3. Identify and promote awareness of existing facilities and resources and fully implement evidencebased strategies and interventions to build and sustain healthy communities for all. 4. Increase the number of accredited facilities (e.g. ACoS, JACHO, AAAHC, etc.) in areas of need. 5. Develop and adopt disaster preparedness plans for cancer patients. 6. Increase data collection, enhanced data elements for electronic health records/health information exchanges. 7. Promote careers in health care with specialized focus on cancer from high school through graduate 14

15 15.4 Enhance existing cancer data systems, including the Texas Cancer Registry, to provide quality data to support outcomedriven cancer control planning and evaluation education. 8. Address projected shortages in cancer workforce geographically and by specialty. 9. Improve health professional knowledge, practice behaviors and system support related to improving cultural competency and implementing policy and systems change that increase provision of or referral to services. 10. Develop and strengthen communication channels to facilitate translation of research into practice. 11. Advocate for appropriate payment for prevention services and for reforming health profession reimbursement systems for all services in the continuum of care. VI. Research and Commercialization 12. Enhance awareness and promote use of cancer data for research and program planning 16.0 Support the highest quality and most innovative research that will enhance the potential for medical or scientific breakthroughs in the prevention and/or treatment of cancer 16.1 Enhance and expand research capabilities and collaboration of public or private institutions of higher education and other public or private entities that will promote a substantial increase in both the quality and quantity of cancer research 16.2 Emphasize rapid and open dissemination and translation of research to practice and the community 1. Promote funding opportunities across the spectrum of cancer research: prevention, basic, clinical and translational, dissemination and community-based participatory research. 2. Utilize a conflict of interest free review process that selects exemplary research projects with highest potential for impact 3. Encourage funding of projects with a level of risk that is commensurate with their potential impact 4. Recruit highly qualified researchers at different career stages with goals of increasing the quality, diversity and size the workforce 5. Include the voice of the advocate/survivor in the clinical and community health research process 6. Engage the advocacy community in advocating for funding to support research across the continuum 7. Promote research training and diversity of trainees at all levels 15

16 17.0 Create and support both a structure and an infrastructure that accelerates the movement of prevention interventions, therapeutics, and diagnostics into practice with the goal of improving patient care and public health 17.1 Increase the life science infrastructure, number of jobs, and develop a diverse workforce as a result of commercial investments 17.2 Increase the economic development of the state as a result of commercial investments 1. Promote funding opportunities that support company formation, relocation and commercialization activities 2. Utilize a conflict of interest free review process that selects exemplary companies and projects with highest potential for patient/public and economic impact 3. Support infrastructure in the state s academic institutions (e.g., core facilities and shared instrumentation grants) 4. Increase opportunities for research into and commercialization of new and more effective screening and early detection methods 16

17 Call to Action (under development) Appendices and References (under development) 17