THE CHALLENGES OF COMMUNITY- BASED COLORECTAL AND BREAST CANCER RESEARCH AND OUTREACH IN DETROIT AND NEW YORK CITY

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1 Hayley S. Thompson, Ph.D. THE CHALLENGES OF COMMUNITY- BASED COLORECTAL AND BREAST CANCER RESEARCH AND OUTREACH IN DETROIT AND NEW YORK CITY Associate Professor Karmanos Cancer Institute, Population Studies and Disparities Research Wayne State University, Department of Oncology

2 DEFINITIONS Community-placed research Conducting research in a community as a place or setting. Community members have limited, if any involvement in what is primarily a researcher-driven endeavor. Community-based participatory research (CBPR) Conducting research that requires the active engagement and influence of community members in all aspects of the research process. Israel et al., 2001

3 MOVING BEYOND THE CLINIC Community-placed research A first step towards moving beyond clinic-based discovery to population-based intervention. Translational research Process of applying discoveries generated during research in the laboratory, and in preclinical studies, to the development of trials and studies in humans. Research aimed at enhancing the adoption of best practices in the community. Rubio et al, 2010; National Institutes of Health.

4 GOALS To describe two community-based research efforts to increase colorectal cancer (CRC) and breast cancer (BC) among African Americans in New York City CRC screening navigation among African American men BC education and outreach among African American women Discuss lessons learned (still learning!) that can inform similar efforts in Detroit. Explore ways that a CBPR approach can transform these efforts.

5 REDUCING DISPARITIES What are cancer health disparities? The National Cancer Institute defines them as adverse differences in cancer incidence (new cases), cancer prevalence (all existing cases), cancer death (mortality), cancer survivorship, and burden of cancer or related health conditions that exist among specific population groups in the United States.

6 CRC IN THE UNITED STATES Incidence 142,820 estimated new cases in % of all new cancer cases Mortality 50,830 estimated deaths in % of all cancer deaths Third most common cancer in both men and women.

7 Mean age at diagnosis = 69 years

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10 AGE-ADJUSTED INCIDENCE AND MORTALITY INVASIVE CANCERS OF THE COLON/RECTUM * Incidence Mortality Detroit City Oakland Macomb Wayne Monroe MICHIGAN United States** *Michigan Dept. of Community Health, Cancer in Michigan, 2009: An Assessment of the Cancer Burden in Michigan, **NCI SEER Cancer Statistics; seer.cancer.gov

11 MICHIGAN CRC STATISTICS BY RACE AA females White females AA males White males Incidence Mortality Late-stage diagnosis * Per 100,000 MDCSS,

12 RACE & CRC STAGE OF DIAGNOSIS There is also a disparity in terms of stage of diagnosis Diagnosis at localized stage AA: 36% White: 40% Five-year survival is 90% if CRC is detected at a localized (early) stage. Only 39% of colorectal cancers are diagnosed at an early stage. American Cancer Society 2013 Cancer Facts & Figures

13 CRC SCREENING MODALITIES Colorectal cancer screening tests fall into two categories: Fecal tests (guaiac-based fecal occult blood test (gfobt) or fecal immunochemical test (FIT) Structural examinations (colonoscopy, double contrast barium enema, flexible sigmoidoscopy, etc.). Compared to colonoscopy, fecal tests are non-invasive, require less bowel prep and no sedation, and are less costly. Colonoscopy, however, offers the opportunity to identify, biopsy, and remove polyps in a single procedure.

14 CRC SCREENING MODALITIES (CONT.) The fecal occult blood test (FOBT) starting at age 50 has been shown to lower mortality by 33%. Screening colonoscopy is associated with a 76-90% reduction in mortality.

15 CRC SCREENING BY RACE US AA US - White MI AA MI - White Adults age 50+ who have had a stool test in past 2 years Adults age 50+ who have had a stool test in past year Adults age 50+ who have ever had endoscopic screening Adults age 50+ who have ever had endoscopic screening in past 10 years BRFSS data; 2010 NHIS data.

16 CRC SCREENING RATES (CONT.) These screening rates fall far below the goals of Healthy People 2020 which are to increase the proportion of adults who receive colorectal cancer screening to 70.5%. Similar to the American Cancer Society s 2015 national objective to increase this proportion to 75%.

17 PATIENT NAVIGATION Patient navigation was originally developed as a strategy to decrease well-documented racial, ethnic, and socioeconomic disparities in cancer outcomes. A process through which an individual the patient navigator guides patients who have abnormal screening results or an actual cancer diagnosis through and around barriers within complex cancer care systems to help ensure timely diagnosis and treatment. Navigation has evolved into an intervention approach that promotes access to a range of cancer screening and support services.

18 BARRIERS TO COLONOSCOPY Cost of care Transportation Facility-related barriers Bowel prep Lack of escort Fear of detecting cancer Concerns about pain and discomfort Embarrassment related to colonoscopy Masculinity-related aversion to exams of the rectum Medical mistrust Fatalism Fear of procedure

19 DEFINITION OF PATIENT NAVIGATION Assistance offered to patients, survivors, families, and caregivers to help them access and chart a course through the healthcare system. A barrier-focused intervention in which patient navigators help individuals overcome obstacles from screening to treatment and in coping with challenges during survivorship

20 BENEFITS OF CRC SCREENING NAVIGATION Benefits: Hospital Better coordination and continuum of care. Improved colon cancer screening rates. Improved patient outcomes. More colonoscopy referrals. Benefits: Provider Navigators help free up provider time by taking on logistical and educational tasks. Help patients arrive on time and prepared. Benefits: Patient Enhanced access to care and services. Reduced barriers to care (e.g., financial, insurance, education). Increased patient satisfaction.

21 CRC SCREENING NAVIGATION: NEW YORK CITY

22 Population: 8.3 million

23 NYC PUBLIC HOSPITAL SYSTEM The largest municipal healthcare organization in the country. Serves 1.4 million New Yorkers every year and more than 475,000 are uninsured. 23 hospitals and health centers across 5 boroughs. Part of mission statement To extend equally to all New Yorkers, regardless of their ability to pay, comprehensive health services of the highest quality in an atmosphere of humane care, dignity and respect

24 HHC ETHOS On HHC website: Open letter to immigrant New Yorkers from HHC president and NYC Commissioner of Immigrant Affairs (excerpts). Do not be afraid to go to the doctor, the clinic, the hospital or the emergency room. Undocumented immigrants can get medical care in New York with no fear. We respect you and want to help you. People who work in a public hospital will not tell the Immigration Service or other law enforcement agencies your immigration status. We will not tell anyone.

25 NYC CRC INITIATIVES C5: New York City Colon Cancer Control Coalition: focus on advocacy, resource development, and policy initiatives. Cancer Prevention and Control Program NYC DOHMH Launched the Colonoscopy Patient Navigator Program in 2003 C5: New York City Colon Cancer Control Coalition 21 Patient Navigator programs in partnership with public and private hospitals. NYC witnessed a 64% increase in screening rates, from 42% in 2003 to 69% in Racial and ethnic colon cancer screening disparities among Blacks, Whites, Hispanics and Asians have been eliminated.

26 PRIMARY CARE NAVIGATION STUDY Patient Navigation for CRC Screening with Low-Income Minorities NCI - R01CA PI: William Redd, Ph.D.; Thompson, Co-I , Mount Sinai School of Medicine Primary aim: To compare the efficacy of three interventions on adherence to colonoscopy CRC screening in average risk, low-income AAs who have a primary care physician referral for colonoscopy. Standard patient navigation (SPN) Culturally-targeted patient navigation by professional (CTPN-Pro) Culturally-targeted patient navigation by peer (CTPN-Peer)

27 CULTURALLY TARGETED PATIENT NAVIGATION (CTPN) Developed and manualized an navigation protocol Table of contents Background WHAT ARE CANCER AND COLORECTAL CANCER (CRC)? COLORECTAL CANCER (CRC) AS A PUBLIC HEALTH ISSUE CRC IN BLACK AMERICANS WHAT IS COLONOSCOPY? OPEN-ACCESS COLONOSCOPY REFERRAL OF PATIENTS FOR COLONOSCOPY What is Patient Navigation & why do we need it? BARRIERS TO COLONOSCOPY DESCRIPTION OF THE STUDY WHY USE THE PATIENT NAVIGATION MODEL? PATIENT NAVIGATION IN NYC

28 CULTURALLY TARGETED PATIENT NAVIGATION (CTPN) Table of contents (continued) What is Patient Navigation & why do we need it? OVERVIEW OF PEER PATIENT NAVIGATION TRAINING OF PEER PATIENT NAVIGATOR TRAINING GENERAL RESPONSIBILITIES OF THE PEER PATIENT NAVIGATOR CULTURAL TARGETING Navigation Sessions FIRST CONTACT BETWEEN PEER PATIENT NAVIGATOR & PARTICIPANT SCHEDULING IMMEDIATELY AFTER THE FIRST CALL REMINDER CALLS AND NO SHOWS FOLLOW-UP CULTURALLY-TARGETED COMPONENTS

29 CULTURALLY TARGETED PATIENT NAVIGATION (CTPN) Table of contents (continued) Communicating about Barriers to Colonoscopy Introduction and Goals Provide Information Telling Your Story Strategies for Exploring and Addressing Patient Concerns about Colonoscopy Talking about Common Colonoscopy Concerns Special Issues General Guidelines to Remember Telephone Techniques Glossary

30 STRATEGIES FOR EXPLORING AND ADDRESSING PATIENT CONCERNS ABOUT COLONOSCOPY Peers: CEDIP Clarify, Empathize, Disclose, Inform, and Plan. Pros: CEEP Clarify, Empathize, Explain, and Plan. Shelton et al. (2011) Training Experiences of Lay and Professional Patient Navigators for Colorectal Cancer Screening. Journal of Cancer Education. Early assessments showed that LHWs intervention-related knowledge was significantly lower than that of Pros. No significant differences in knowledge scores between LHWs and Pros for most subsets of knowledge items in later assessments. No significant differences in LHWs and Pros reported self-efficacy and satisfaction with training.

31 PRIMARY CARE STUDY FINDINGS Sample size: N=350 Peer-patient navigation (n=181) Pro-patient navigation (n=123) Standard (n=46) Colonoscopy completion rate = 75.7%.

32 COMMUNITY-BASED SCREENING NAVIGATION: THE MEN S HEALTH INITIATIVE (MHI@NYU) Comprehensive Center of Excellence in Disparities Research and Community Engagement (P60-MD003421) PI: Joseph Ravenell, MD; Thompson, Co-I Mister B (The Multi-Intervention Study to Improve CRC Screening and to Enhance Risk Reduction in Black Men) CDC funding added a third arm in which participant received both interventions. Faith-based Approaches to the Treatment of Hypertension and Colorectal Cancer Prevention (NHLBI - R01HL096946) Co-PIs: Joseph Ravenell, MD & Hayley Thompson, PhD Faith-CRC

33 PRIMARY AIM To evaluate the effect of a lifestyle intervention delivered through telephone-based motivational interviewing (MINT) versus a patient navigation intervention on blood pressure reduction and CRC screening. Participants must be age 50 years or older. Self-identified as a black or African American male. Have uncontrolled hypertension. Have a need for CRC screening No colonoscopy in the last 10 years. No Flexible sigmoidoscopy, digital contrast barium enema or CTcolonoscopy in the last 5 years. No FIT or FOBT in the last 12 months.

34 COMMUNITY-BASED NAVIGATION Similar to clinic-based recruitment Also culturally targeted Telephone-based Primary call (build rapport, education, problem solving) Greater focus on individual engagement Extensive outreach efforts at community sites Greater contact with individuals who are not connected to care.

35 REPLICATION OF COMMUNITY-BASED NAVIGATION IN DETROIT: CHALLENGES Funding Identification/recruitment of eligible participants Fully engaging participants in navigation Connection to care

36 CURRENT EFFORTS IN MICHIGAN The Michigan Department of Community Health (MDCH) has implemented the Michigan Colorectal Cancer Early Detection Program (MCRCEDP) Funded by CDC Outreach and education, individualized risk assessment, and screening to eligible 50- to 64-year-old adults in 38 counties Colorectal cancer screening is provided through FOBT for average-risk clients and colonoscopy for clients at increased risk for colorectal cancer. MDCH has a CRC screening navigation guide MIYO (Make It Your Own) Web-based system providing tools for the creation of customized, culturally appropriate CRC education material

37 Source: Mitzi Koroleski, RN, Huron County Health Department, MCC Webinar, March 2013.

38 FUNDING Men s Health Initiative studies are NIH-funded research grants. MCRCEDP is funded by CDC; service-focused grant. Can we leverage expertise and resources to increase funding to serve the entire state? Networked, coordinated grant proposal efforts Funding needed for tremendous infrastructure needs.

39 IDENTIFICATION & RECRUITMENT OF ELIGIBLE PARTICIPANTS MHI: Extensive outreach to barbershops and churches. Barbershops Barbershop owners are the gatekeepers Incentives to barbershop owners Churches Endorsement from the pulpit PI involvement in recruitment Trained 2-3 lay health advisors per church Timing is everything!

40 ENGAGING PARTICIPANTS Low prioritization of CRC screening among AA men Low sense of urgency for screening for asymptomatic, slow-growing disease Low knowledge Low perceived risk Competing demands and stressors Co-morbidities Financial stress Work Family care Immigration/visa issues Court appearances/incarceration

41 ENGAGING PARTICIPANT (CONT.) Unexpected demands on navigators Provided pastoral/spiritual support Provided crisis management support Paid for meals Paid for haircuts Maintaining contact and retaining participants Stable, working telephone numbers Unreliable contact information Transience/homelessness For those with cell phones, limited minutes

42 Navigator reported barriers based on first contact (N=1037) 1.Lack of knowledge: Colonoscopy procedure: risks, benefits, bowel prep 26% Other barriers (10 combined; less than 2%) 12% 5.Beliefs and Attitudes: Masculinity/stigma: embarrassment, peer pressure 3% 18.Personal issues and Other 6% 14. Competing health demands/comorbidity 4% 16.Housing/phone 7% 2.Lack of knowledge: risks, family history, symptoms 23% 11.Insurance issues 10% 13.Scheduling/time: Work, childcare/adult care 9%

43 CONNECTION TO CARE MHI: NYC s public hospital system and C5 Michigan: Federally Qualified Health Clinics (FQHCs) and Community Health Centers (CHCs) Affordable Care Act Screening Requires that all health plans cover colorectal cancer screening (fecal occult blood testing, sigmoidoscopy, or colonoscopy) in adults beginning at age 50 and continuing until age 75. Eliminates out-of-pocket costs for preventive services such as colonoscopies and exempts preventive services from deductibles under the Medicare program. The deductible will be waived for colorectal cancer screening tests even when polyps are detected and removed. Treatment Remove dollar limits on care by insurance companies Limit the amount patients must pay in out-of-pocket costs and deductibles. May still be out of reach for the very poor. What about undocumented patients?