Equity in Cancer Survivorship: What we think we know and what seems to be missing

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1 Equity in Cancer Survivorship: What we think we know and what seems to be missing Kimlin Tam Ashing, PhD Professor, Beckman Research Institute Founding Director, CCARE Center of Community Alliance for Research & Education Department of Population Sciences City of Hope Medical Center

2 Learning Objectives Increase knowledge of both general population and cancer survivor diversity Discuss some of the challenges in Survivorship Research and Practice considering Systemic, Provider, Investigator, Individual and Population level contexts Opportunities for attending to survivors needs -- rooted in Diversity and Inclusion Value and Practice

3 U.S. Population by Race/Ethnicity Projected U.S. Growth Population U.S. Census Bureau

4 Our Society Is Increasingly diverse in country of origin, identity, ethnicity, language, religion, political status

5 Our Society Is Highly diverse in job status, income level and education

6 Our Society Is Rapidly shifting to an older, and more Latino- and Asian- American population, and urban. Rapidly shifting to an older, and more Latino- and Asian-American population, and urban

7 Our Society Is Not healthy due to poverty, health care inaccessibility, unhealthy eating, physical activity

8 Our Society Is Suffering from environmental pollution: food, chemical, radiation, light, sedentary lifestyles

9 Our Society Is Suffering from increasing cancer, diabetes, obesity and chronic diseases with barrier to accessible and quality care

10 Rates are per 100,000 Cancer Incidence and Death Rates by Site, Race and Ethnicity, U.S., Source: American Cancer Society

11 Rates are per 100,000 Cancer Incidence and Death Rates by Site, Race and Ethnicity, U.S., Source: American Cancer Society

12 Hispanic Population by State Size of Opportunity U.S.

13 Estimated New Cancer Cases and Deaths Among Hispanics

14 Asian Population by State Asians and Asian Americans in the US (millions) Census Bureau data

15 Estimated New Cancer Cases and Deaths Among Asian American, Native Hawaiian and Pacific Islander

16 African American Population by State African American Population by State Census Bureau data

17 Estimated New Cancer Cases and Deaths Among African Americans

18 Native American Population by State Source: Census 2000

19 Cancer Cases Source: American Cancer Society Cancer Facts & Figures Atlanta, GA

20 Cancer Health Disparities Ethnic minorities and poor bear unequal premature mortality, morbidity Ethnic minorities, poor, immigrant, refuge, elderly, sexual minority have unequal cancer, overall disease burden Socio-political, social, immigration, gender identity, sexual preference, age status influence access to & quality care, health, survival and QOL Knowledge, resources, quality care and service gaps pertinent to specialty care are widening infrastructure for data collection, mining, functionality and utilization about marginalized populations are lacking Research inclusion and participation are insufficient Federal, State policies require ethnic minority and diversity inclusion Ethnic minorities equal 20% of the cancer survivor population and growing Providers within underserved communities have limited access to optimal health care resources, precision medicine and research

21 Cancer Survivors in the US

22 Survivorship Intervention and Care Survivorship care is integrated, patient centered care promoting the best health possible: Nurturing Quality of Life Reducing Distress, Pain and Suffering Promoting Health and Wellbeing Supporting Patient Satisfaction and Activation Extending Life? For All People Affected by Cancer

23 Survivorship Research In advancing the Science of Survivorship we conduct research that builds, designs, tests and evaluates studies that present representative population data and evidence of interventions, strategies and tools to provide survivorship care that promote the best health possible for our diverse cancer survivor population.

24 Addressing Survivorship Systemic Level Challenges Survivorship Provider/Investigator Level Challenges Patient/Population Level Challenges

25 Systemic Level Challenges Resources Funding Metrics Personnel Accessibility Systemic Level Challenges Infrastructure Acceptability Affordability Technology

26 Provider/ Investigator Level Challenges Level Challenges Training Clinical Competence Cultural Competence Communication Provider/ Investigator Level Challenges Skill Cultural Humility Self Metrics

27 Patient/Population Level Considerations General Health Health Status Co-Occurring Illnesses Psychological Distress Overweight-Obesity Nutrition Physical Activity Individual Aspects of Personhood Life Stress Resilience/Hardiness Spirituality Medical Efficacy Health Choice and Behaviors SES Family Community Family strain Stability Coping Engagement Characteristic Resources Beliefs Support Functional burden Demography Services Training

28 Complexity of Comorbidity The increased complexity of comorbidity is associated with worse health outcomes, more complex clinical management, and increased health care costs. Comorbidity Health Outcomes: Health Status Short Term & Long Term Quality of Life Distress Treatment Outcomes Disability: Physical & Functional Comobid burden Mortality Kerr, E. A., et al. (2007). "Beyond comorbidity counts: how do comorbidity type and severity influence diabetes patients treatment priorities and selfmanagement?" J Gen Intern Med 22(12):

29 Cancer Disparities Of all the forms of inequality, injustice in health care is the most shocking and inhumane. -Dr. Martin Luther King, Jr. African Americans are more likely to get and die from cancer Latinos are most at risk for toxic environmental exposures. Asian Americans are the least likely to get cancer screening Native Americans are most likely to be left out in research and policy

30 Cancer Survivorship Disparities Population-specific differences in the presence of disease, health outcomes, quality of health care, and access to health care services African Americans: Delayed Diagnosis Treatment, Poor Surveillance Physical Outcomes Latino Americans: access to care, Delayed Diagnosis Function Emotional Burden Asian Americans: Fear Uncertainty Fatigue Cultural and Linguistic Concerns Native Americans: Lack services, Delayed Diagnosis Treatment Functional Strain

31 Suvivorship Interventions Inequity Psychosocial interventions among non- Hispanic white cancer survivors More than 400 trials A variety of health benefits Reduced risks of recurrence and mortality (Stagl, 2015, Andersen et al., 2008, Spiegel et al., 1989) Cancer related morbidity (Stanton 2015) Depressive symptoms (McCorkie 2014) Improved quality of life (Ganz 2015, Glanz, Janz) Improved physical functioning (Alfano 2012, Stein 2016) Fewer interventions among minorities

32 Provocative Questions Voices of Advocates Why Do We Have. 1) More and different cancers and at younger ages 2) More advanced, aggressive, metastatic cancers 3) More co-occurring illness and second cancers 4) Greater daily living risks factors: the Socioecological Pre- and Comorbid Contexts 5) Suboptimal care: preventive, diagnostic, therapeutic care; poor communication, satisfaction, quality; discrimination; marginalization, surveillance and follow-up primary, oncology and specialty care 6) Poor survival: the persistent 15% lag 7) Persistent survivorship outcomes 8) We will join the scientists, please listen and respond to our voices

33 Our Nation is Diverse

34 ConNECT Framework for Health Equity Science and Practice DISCOVERY DEVELOPMENT Demographic Shifts Cultural & Linguistic Diversity Group Heterogeneity HEALTH INEQUITIES Integrating Context Prioritizing Specialized Training Fostering a Norm of Inclusion Health Status Morbidity Mortality Quality of Life HEALTH EQUITY Harnessing Communication Technology Ensuring Equitable Diffusion of Innovations DISSEMINATION DELIVERY Alcaraz, Sly, Ashing et al., 2016

35 Community Inclusion: Symbiotic Partnership Ashing, 2013

36 Cultural & Socio-Ecological Contextual Framework for Precision Medicine in Population Health

37 Fitting into the Moon Shot: Cancer Research, Policy, Practice Continuum

38 Multisectoral Engagement for Survivorship Training, Research and Practice Media & Technology Oncology Providers Non- Oncology Providers Patients, Survivors, Caregivers Primary Care Providers Schools, Employers Researchers Survivorship Academic Institutions DPH, Public servants Community Based Orgs Policy Makers National Cancer Orgs Community Hospitals & Clinics Ashing, 2014

39 Research Participation Source: - Baseline Study of Patient Accrual Onto Publicly Sponsored Trials, Coalition of Cancer Cooperative Groups for the Global Access Project, National Patient Advocate Foundation, April Cancer Facts Cancer Clinical Trials: Participation by Underrepresented Population. Intercultural Cancer Council. Retrieved online on March 30, Website:

40 40 BY 20: Ethnic Minority Clinical Trial Participation 40% Ethnic Minority Enrollment Asian/Pacific Islander, 8.0% Black/African American, 14.0% Native American/Alaska Native, 2.0% Multiple, 1.0% Hispanic/Latino, 15.0% White, 60%

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44 Thank You