The Office of Community Outreach and Engagement supports the integration of research, clinical care and dissemination of research findings to our catchment area, which we have defined as the state of Indiana.
Although, the incidence of cancer in Indiana is equivalent to national averages, mortality is significantly higher and the state's underserved populations suffer the greatest cancer burden; thus, they are the primary focus of our collaborative efforts.
The work of the Office of Community Outreach and Engagement focuses on two interactive arms:
- Outreach and Engagement
The reseach arm is led by Susan Rawl, Ph.D., and focuses on:
Specific Aim 1: To define, understand and monitor the cancer incidence, mortality, determinants and disparities in Indiana.
Indiana has a population of 6.6 million people with estimates that it will increase to 7 million by 2030. The state covers an area of 36,418 square miles, making it the 38th largest state in the country. The state is modestly diverse with 85.4% Whites, 9.7% African Americans and 2.2% Asians. Hispanics or Latinos represent 7% of the population. While African Americans reside in cities all over the state, about 62% of the African American population resides in just two urban counties: Marion (central Indiana) and Lake (northwest Indiana). Within these counties, African American residents account for more than 25 percent of the total population. The Hispanic population largely resides in northwest and northcentral Indiana.
Cancer burden in Indiana
According to the American Cancer Society, approximately 37,250 Indiana residents will develop cancer in 2018 and 13,820 are expected to die. Cancers with the highest mortality in Indiana are lung, gastrointestinal (colorectal and pancreas) and breast cancers, representing approximately 40-45 percent of all cancer deaths in our catchment area.
The overall cancer incidence rate in Indiana is comparable to the U.S. rate; however, the overall mortality rate is approximately 10 percent higher. Cancers that have statistically higher mortality in Indiana than in the nation include lung and colorectal cancers. Although overall mortality for cervical cancer is relatively low, Lake County in northwest Indiana has a cervical cancer mortality rate that is among the highest in the nation. Understanding these mortality disparities requires a more granular look into geographic, racial, socioeconomic and behavioral factors affecting cancer morbidity and mortality.
Racial disparities impact cancer burden
The mortality for breast (31.7%) and colorectal cancer (29.5%) is significantly higher in African Americans compared to non-Hispanic Whites. Also, breast cancer in African American women is more likely to have high-risk features such as higher grade, advanced stage and negative ER/PR status compared to non-Hispanic White women. Although breast cancer incidence is lower in Hispanics compared with non-Hispanic White women, Hispanic women are 20 percent more likely to die of breast cancer when diagnosed at a similar age and stage. Additionally, African-American women in Indiana compared to non-Hispanic whites had a 19 percent higher cervical cancer incidence and 40 percent higher mortality rate. Pancreatic cancer mortality is also higher in African Americans than non-Hispanic Whites.
Risk factors and behaviors affecting the cancer burden in Indiana
According to America's Health Rankings 2017 Report, Indiana ranks 38th of 50 states with respect to all health care determinants and 41th with respect to lifestyle and behavioral factors that influence cancer risk, such as smoking. Smoking rates in Indiana are 21.1% compared to 16.4% in the United States and are higher for African Americans compared to Hispanic and White populations in Indiana. Overall, breast cancer screening is lower: 67.3% compared to U.S. rates of 72.6%. Colorectal cancer screening is also lower: 71.1% in Indiana compared to 74.1% in the nation. Indiana also has lower rates of Pap testing compared to the nation, while the percentage of people obtaining the three recommended HPV vaccinations in Indiana (29.4%) is significantly lower than the nation (37.1%). Overall, risk factors that increase incidence of lung and HPV related cancers (smoking and vaccination) show marked disparities in Indiana compared to the nation, as well as disparities across racial groups. Furthermore, behaviors that can detect cancer at earlier stages, and thus decrease mortality (cancer screening), are markedly lower in our catchment area compared to the rest of the nation. As described in Aim 2, researchers at the cancer center are involved in cutting-edge peer-reviewed research activities to decrease smoking, increase HPV vaccination and increase cancer screening behaviors.
Geographic and demographic issues impacting cancer burden
Within the state, the cancer burden varies by geographic location as well as race. Forty-eight of the 92 counties in Indiana are designated as rural. In the first decade of the 21st century, poverty increased in rural Indiana from 8.5% to 12%. Eight counties in Indiana have statistically higher breast, colorectal or lung cancer mortality rates than Indiana as a whole. There are many characteristics associated with living in a rural area that may account for cancer mortality differences including access to care, sociodemographic variables, health behaviors and cancer screening rates. For example, rural counties demonstrate lower educational levels and a higher percentage of people age 65 and older compared to the state as a whole. Additionally, cancer screening rates in these counties are low. County level screening data demonstrate that Orange County, which has a significantly higher mortality for breast cancer compared to the State, has only 60.3% of women age 40 and over receiving a mammogram compared to the overall Indiana screening rate of 67%. Counties with significantly higher colorectal cancer mortality rates have lower rates of current colorectal cancer screening: Jay (53.6%) and Blackford (58.9%) compared to Indiana as a whole (71.1%). Interventional research targets these rural counties to simultaneously increase screening for breast, cervical and colon cancer. Our biannual survey of rural counties will gather data on behaviors to better inform our community outreach activities.
Specific Aim 2: To conduct and implement impactful research (prevention, screening, treatment and survivorship) that targets issues relevant to catchment area.
Prevention, screening, treatment and survivorship research within and across programs at IU Simon Cancer Center targets breast, GI (colon & pancreas) and lung cancers, which represent the highest cancer mortality in our catchment area. Embedded within our population research is a rich partnership with the community. In collaboration with our Health Disparity Advisory Board and from feedback from our community focus groups, HPV vaccination and cervical cancer were of additional concern. With our community partners, we test interventions targeting risky behaviors that impact the incidence and mortality of these cancers, including smoking, HPV vaccination and early diagnosis through screening. Symptom management research is focused on the discovery and implementation of genomic predictors of drug response. This includes the identification of genetic variants that are associated with clinical drug efficacy and toxicity, basic research to prevent peripheral neuropathy and behavioral research that helps breast, colorectal and lung cancer patients and families cope with the symptoms resulting from cancer diagnosis and treatment. Research to decrease symptomatology is conducted with technology that allows investigators to reach rural populations through Internet- and telephone-based delivery. Clinical research impacting the cancer burden throughout the state is supported through our long-standing infrastructure for multi-site clinical trial accrual through the Hoosier Cancer Research Network (HCRN)
The Outreach and Engagement arm is led by Clint Cary, M.D., M.P.H., and Sarah Wiehe, M.D., and focuses on:
Specific Aim 3: Develop and disseminate evidence-based strategies for prevention, screening, treatment and survivorship in our catchment area and beyond.
Our approach to education and dissemination involves developing strategic alliances between the IU Simon Cancer Center and external (community) partners to effectively implement evidence-based programs for prevention, screening, treatment and survivorship. In addition to external community partners, the cancer center has a long-standing collaboration with key academic entities statewide. As a matrix organization, the cancer center leverages the rich resources of IUPUI, Indiana University - Bloomington, Purdue University, Regenstrief Institute, Indiana University School of Nursing, Fairbanks School of Public Health and the Indiana Clinical and Translational Sciences Institute (iCTSI), including its community core-Community Health Partnerships (CHeP). Drs. Susan Rawl, Victoria Champion, Patrick Loehrer and Paul Halverson (chair of Indiana Cancer Consortium board of directors and dean of the Fairbanks School of Public Health) serve on the board of directors for the Indiana Cancer Consortium who worked collaboratively with the Indiana State Department of Public Health to develop a State Cancer Control Plan that mirrors that of the cancer center.
Due to the strong community and academic partnerships, the cancer center can effectively disseminate best practices within Indiana and beyond. The cancer center supports clinical trial accrual and research in our catchment area and our community partnerships in which we disseminate evidence-based programs. The cancer center has played a leadership role in establishing a number of entities that facilitate research locally, nationally and internationally. Examples include:
Specific Aim 4: Promote health policy that will decrease the cancer burden in Indiana.
A few examples of our work of promoting a health policy to decrease the cancer burden in Indiana:
- Cancer center members and others have worked to promote programs to reduce smoking, including: 1.) increase the tobacco tax by $2; 2.) funding state cessation legislation; 3.) raising the minimum legal age from 18 to 21 to purchase tobacco; and 4.) stop offering special protections at work to employees who smoke.
- Cancer center members and others have directly influenced the priorities of the Indiana Cancer Consortium for the next five years to be consistent with the major cancers affecting the catchment area (breast, lung and colorectal) and risky behaviors (tobacco and HPV vaccinations). Cancer center members were involved in the writing, reviewing and editing of the Indiana Cancer Control Plan: 2016-2020.
- Through the American Cancer Society Cancer Action Network, cancer center members have advocated for: 1.) increased funding for Indiana's Tobacco Prevention and Cessation Program, 2.) access to health care; and 3.) access to affordable cancer screening, which has endured severe budget cuts in recent years. Additional activities include advocating for Indiana legislators to protect teens under 18 from indoor tanning.
The Outreach and Engagement arm also coordinates urban and rural community outreach activities and thus includes the managers for tobacco control and community operations, clinical trial specialists and a statewide cancer liaison that leverages cancer education and outreach with all community outreach programs within the Indiana Clinical and Translational Sciences Institute.