Equity in Cancer Survivorship: What we think we know and what

seems to be missing…

Kimlin Tam Ashing, PhDProfessor, Beckman Research Institute

Founding Director, CCARECenter of Community Alliance for Research & Education Department of Population Sciences

City of Hope Medical Center

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

U.S. Population by Race/Ethnicity

Projected

U.S. Growth

Population

U.S. Census Bureau

Our Society Is…

Increasingly diverse in country of origin, identity, ethnicity, language,

religion, political status

Highly diverse in job status, income level and education

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

Our Society Is…

Our Society Is…

Not healthy due to poverty, health care inaccessibility, unhealthy eating, physical

activity

Our Society Is…

Suffering from environmental pollution: food, chemical, radiation, light,

sedentary lifestyles

Our Society Is…

Suffering from increasing cancer, diabetes, obesity and chronic diseases with barrier to accessible and quality

care

Rates are per 100,000 Cancer Incidence and Death Rates by Site, Race and Ethnicity, U.S., 2006-2010Source: American Cancer Society

Rates are per 100,000 Cancer Incidence and Death Rates by Site, Race and Ethnicity, U.S., 2006-2010Source: American Cancer Society

Hispanic Population by State

Size of Opportunity

U.S.

Estimated New Cancer Cases and Deaths Among Hispanics

Asian Population by State

Asians and Asian Americans in the US (millions) - 2010 Census

Bureau data

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

African American Population by State

African American Population by State - 2010 Census Bureau

data

Estimated New Cancer Cases and Deaths Among African Americans

Native American Population by State

Source: Census 2000

Source: American Cancer Society Cancer Facts & Figures 2005-2015. Atlanta, GA

Cancer Cases

• 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

Cancer Health Disparities

Cancer Survivors in the US

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

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.

Addressing Survivorship

Systemic Level Challenges

Provider/Investigator Level Challenges

Patient/Population Level Challenges

Survivorship

Systemic Level Challenges

Systemic Level

Challenges

Resources Funding

Personnel

Infrastructure

Affordability

Technology

Acceptability

Accessibility

Metrics

Provider/ Investigator Level Challenges Level Challenges

Provider/

Investigator Level

Challenges

Training

Cultural Competence

Skill

Self

Metrics

CulturalHumility

Communication

Clinical

Competence

Patient/Population Level Considerations

General Health

Community

Individual Aspects of Personhood

Family

•Health Status•Co-Occurring Illnesses•Psychological Distress

Overweight-Obesity•Nutrition •Physical Activity

•Life Stress•Resilience/Hardiness•Spirituality

• Medical Efficacy• Health Choice and Behaviors SES

•Family strain•Stability•Coping

•Beliefs•Support•Functional burden

•Engagement• Characteristic•Resources

•Demography •Services •Training

Complexity of Comorbidity

Comorbidity Health Outcomes:Health Status

Short Term & Long Term Quality of LifeDistress

Treatment Outcomes Disability: Physical & Functional

Comobid burdenMortality

Kerr, E. A., et al. (2007). "Beyond comorbidity counts: how do comorbidity type and severity influence diabetes patients’ treatment priorities and self-management?" J Gen Intern Med 22(12): 1635-1640.

The increased complexity of comorbidity is associated with worse health outcomes, more complex clinical management, and increased health care costs.

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

environ-mental

exposures.

Asian Americans

are the least likely

to get cancer

screening

Native Americans are most

likely to be left out in research

and policy

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:

DelayedDiagnosis

Treatment, Poor

SurveillancePhysical

Outcomes

LatinoAmericans: access to

care,DelayedDiagnosisFunctionEmotional

Burden

Asian Americans:

FearUncertainty

FatigueCultural

and LinguisticConcerns

Native Americans:

Lack services,Delayed Diagnosis

Treatment Functional

Strain

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

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 Co-morbid 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

Our Nation is Diverse

DISCOVERY DEVELOPMENT

DISSEMINATION

Integrating

Context

Fostering a Norm of Inclusion

Harnessing Communication

Technology

Ensuring Equitable Diffusion of Innovations

Prioritizing Specialized Training

Demographic Shifts

Cultural & Linguistic Diversity

Group Heterogeneity

HEALTH INEQUITIES

Health Status

MorbidityMortality

Quality of Life

DELIVERY

HEALTH EQUITY

ConNECT Framework for Health Equity Science and Practice

Alcaraz, Sly, Ashing et al.,

2016

Community Inclusion: Symbiotic Partnership

Ashing, 2013

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

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

Survivorship

Oncology Providers

Non-Oncology Providers

Primary Care

Providers

Researchers

DPH, Public servants

Policy Makers

Community Hospitals &

Clinics

National Cancer Orgs

Community Based Orgs

Academic Institutions

Schools, Employers

Patients, Survivors, Caregivers

Media & Technology

Multisectoral Engagement for SurvivorshipTraining, Research and Practice

Ashing, 2014

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 2006

- Cancer Facts – Cancer Clinical Trials: Participation by Underrepresented Population. Intercultural Cancer Council. Retrieved online on March 30, 2011. Website: http://iccnetwork.org/cancerfacts/ICC-CFS11.pdf

40% Ethnic Minority Enrollment

40 BY 20: Ethnic Minority

Clinical Trial Participation

Native American/Alaska Native, 2.0%

Asian/Pacific Islander, 8.0%

Black/African American, 14.0%

Hispanic/Latino,

15.0%

Multiple, 1.0%

White, 60%

References

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References

Thank You