Urban Latino African American Cancer (ULAAC) Disparities Project at Centinela Freeman Regional Medical Center

1. Urban Latino African American Cancer (ULAAC) Disparities Project at Centinela Freeman Regional Medical Center Michael L. Steinberg, MD, FACR Principal Investigator David Khan, MD Co-Principal Investigator David Huang, MD Co-Principal Investigator Nicole Harada, CCRC Clinical Research Coordinator

2. Our Team • Principal Investigator • Michael Steinberg, MD • Co-Principal Investigators • David Khan, MD, Radiation Oncologist, CF • David Huang, MD, Radiation Oncologist, CF • Nell Forge, PhD, MPH, Assoc. Behavioral Scientist, RAND • Allen Fremont, MD, PhD, Assoc. Natural Scientist, RAND • Oscar Streeter, MD, Radiation Oncologist, USC • Mack Roach, MD, Radiation Oncologist, UCSF

3. Cancer Disparities Research Partnership (CDRP) Program RTOGToronto, Canada Program Update June 2006

4. Status of Clinical Trials • 7 Trials Open • 5 NCI Sponsored Trials • 1 NCIC Sponsored Trial • 1 Community-Based Trial

5. Trials Open

6. Trials Pending Approval by WIRB • Cancer Post Treatment Survey – Exemption • Rand/ULAAC Patient Navigator Survey – In progress • RTOG 0123 – In progress • RTOG 0214 – In progress • RTOG 0116 – In progress • S0424 – In progress

7. Trials Accrued

8. Accrual to Trial by Ethnicity

9. Accrual to Trial by Gender

10. Accrual to Trial by Residence Los Angeles (90008 – 90047) Inglewood (90301 – 90305) Gardena (90249) Torrance (90250) Culver City (90230) Marina Del Rey (90292) Sun City (92586)

11. Clinical Trials – NCI & Device Sponsored

12. Reasons for declining clinical trial

13. Publications and Presentations • “Implementing a Lay Patient Navigator Program to Reduce Barriers for Minority Patients’ Access to Cancer Care and Clinical Trials: Essential Steps and Initial Challenges” • Manuscript resubmitted • “National Leadership Summit on Eliminating Racial Disparities in Health” • January 9-11, 2006, Washington, D.C. • “Prophylactic Post-Operative Antibiotics for Prostate Brachytherapy” • Presented at the 2006 ASCO Prostate Cancer Symposium

14. Publications and Presentations • “Developing a Lay Patient Navigator Program Addressing Barriers to Care and Participation in Clinical Trials” • Presented at the REACH 2010 Conference, May 17, 2006 • “Preliminary Results and Evaluation of MammoSite® Balloon Brachytherapy for Partial Breast Irradiation for Pure Ductal Carcinoma in Situ: A Phase II Clinical Study” • Presented at the American Society of Breast Surgeons Meeting, April 2006 • “Using Telesynergy® to Improve Access to Clinical Trials at an Underserved Community Based Hospital” • Submitted to ASTRO, November 2006

15. Publications and Presentations • A Lay Patient Navigator Program as Part of a Clinical Trials Infrastructure in a Community Hospital Serving Minority and Low Income Patients • Submitted to Cancer Health Disparities Summit 2006, Bethesda, MD, July 17-19, 2006 • The Use of Lay Patient Navigators to Improve Quality of Care and Accrual to Clinical Trials for Radiation Oncology Patients Who Are Minorities or of Low Socioeconomic Status • Accepted for oral presentation at ASTRO 2006,   Philadelphia, PA, Nov. 5-9, 2006 • The Urban Latino African American Cancer (ULAAC) Disparities Project: Implementing the NCI-Radiation Research Program Model • Cancer in African Americans - Challenges and Opportunities the Cleveland Clinic Taussig Cancer Center, May 11-13, 2006

16. Update on Partnership Relations • Centinela Freeman • USC • UCSF • RAND

17. USC/Norris Cancer Comprehensive Center • Mentoring Institution • Guidance and oversight in clinical trial infrastructure • Collaboration of clinical trials • MammoSite DCIS Trial (completed) • P53 Trial ( in development ) • High Risk Prostate Cancer ( in development ) • Collaboration of tumor boards and case conferences • Weekly combined tumor boards

18. Cancer Disparities Research Partnership (CDRP) ProgramRTOGToronto, Canada Process Evaluation: Overview RAND Corporation

19. Overview of RAND Activities • Navigator focus groups • Development of patient surveys and interview protocols • Fostering research opportunities (e.g. ACTION) • Assistance on manuscripts • Provider and staff interviews

20. Process Evaluation • Assess whether the project’s goals and objectives have been operationalized and implemented as intended. • Identify areas where adjustments are needed to increase the program’s effectiveness and efficiency.

21. Process Evaluation: Methods and Stakeholders • Focus Groups • Patient Navigators • Face to Face Interviews • Patients • Semi-Structured Interviews • Community Providers • DFMH/ULAAC Staff

22. Focus Group Sessions:Content Areas • Patient Navigator • Role • Motivation • Skills • Needs • Patient • Navigator Training • Clinical Trials • Perceptions

23. Patient Instrument:Key Domains • Patient Needs and Barriers • Perceived Satisfaction • Navigator Support • Provider Care • Self-Efficacy • Cancer knowledge • Empowerment

24. Update on Telesynergy/Telemedicine • Tumor Boards • USC – Every Monday • CFHS – Every Wednesday • Training Sessions • ULAAC Navigator Training Programs • Meetings • Investigator Meeting – Quarterly • Medical Advisory Board – Quarterly • ULAAC – Every Wednesday • Increased participation with mentoring institutions • Increased participation with CDRP sites • Clinical Trials • Collaboration with other CDRP sites • Patient consent (Speaking) • Abstract submitted to ASTRO

25. Cancer Disparities Research Partnership (CDRP) ProgramRTOGToronto, Canada Patient Navigator Program

26. Training Program

27. Active Navigators

28. Ethnicity of Active Navigators

29. Navigators Who Are CancerSurvivors

30. Patient Navigation Data 67% accepted navigation

31. Ethnicity of Patients Approached Percentage Breakdown: 71% African Americans, 13% Latinos, 11% Caucasians, 4% Asians, 1% Other

32. Ethnicity of Patients Accepting Navigation Percentage Breakdown: 67% African Americans, 71% Latinos, 55% Caucasians, 70% Asians, 33% Other

33. Ethnicity of Patients Declining Navigation

34. Reasons for Declining Navigation

35. 6 Most Common Barriers

36. Solutions for Barriers • Transportation • Taxi vouchers • Variety of van services to accommodate patients with special needs • Work with patients’ insurance carrier to provide transportation • Navigators who are willing to drive patients to and from treatment • Psychosocial • Match patients with navigators who are cancer survivors (matching type of cancer when possible) • Increase frequency of comfort calls • Referral to patient/family support groups and/or counseling • Financial • Financial assistance organizations • Food vouchers • Salvation Army and Catholic Charities • Utilities assistance • Housing assistance and referral

37. Solutions for Barriers • Fear of Cancer • Provide linguistically appropriate, cancer-specific educational materials • Accompany patients to cancer-related medical visits • Encourage support group participation • Caregiver • Referral to In Home Supportive Services • Referral to Multipurpose Senior Services Program • Referral to Comfort Keepers • Language • Assign navigators who are culturally and linguistically appropriate • Make sure translator is available at patients’ appointments • ALAS Para tu Salud – a translation program based in Los Angeles, CA

38. Cancer Post-Treatment Survey Study Questions: • Are there quantitative differences between patients who received navigation versus those who did not in various QOL domains? • Are there patient perceived quality differences in the two groups?

39. Cancer Post-Treatment Survey Source: RTOG A-5 Demographic Survey FACIT and Model Questions Domains Evaluated Spiritual Social/Family Physical Emotional Functional Patient Centered Questions Relationship Based Questions

40. Cancer Disparities Research Partnership (CDRP) ProgramRTOGToronto, Canada Milestones and Lessons Learned

41. ULAAC Access Database

42. ULAAC Access Database –Cancer Post Treatment Survey

43. Quality Assurance Patient Evaluation of Navigator Services Structured Interview

44. Centinela Freeman Community Foundation • Established Community Health Foundation • Mission: Establish Infrastructure to Support Access to Care and Clinical Research in the Community • Current Activities • Recruited Executive Director • Diabetes Screening and Care/Navigator Program • High School Sports Trainer Funding • Centinela Freeman Research Institute • Nursing Academy • Trains 72 RNs per year

45. MSW Intern’s Role • Provided navigation • Conducted various in-services for navigators (basic training/orientation, self disclosure guidelines) • Developed prototype Patient Tracking Notebook • Built resource guide for navigators • Laid groundwork for Latino Cancer Support Group • Spanish

46. Lessons Learned • It takes 15 months to start navigating patients • It takes at least 1 year to gather enough data for analysis of navigation • It takes 18 months to start clinical trials • Clinical trials applicable to our institution and patient population are not plentiful • Community hospital infrastructure was not initially conducive to grant support…we had to create our own