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 ASTRO Philadelphia, Pa. November,2006 Principal Investigator Michael L. Steinberg, MD, FACR Co-Principal Investigators David Huang, MD David Khan, MD Allen Fremont, MD, PhD Nell Forge, PhD Oscar Streeter, MD Mack Roach, MD

Profound advances in medical science have contributed to: Increased longevityIncreased longevity Improved quality of life for many Americans. H.FreemanImproved quality of life for many Americans. H.Freeman

Despite these advances, some Americans have not fully benefited from this progress - particularly the poor and underserved - as evidenced by their higher cancer incidence and lower survival. as evidenced by their higher cancer incidence and lower survival. H Freeman

Causes of Health Disparities Freeman, Adapted from Cancer Epidemiology Biomarkers & Prevention, April 2003 Prevention Treatment Post Treatment/ Quality of Life Survival and Mortality Social Injustice Early Detection Diagnosis/ Incidence Culture Poverty/ Low Economic Status

Cancer Disparities Research Partnerships Program Partner Patient Navigator Telesynergy Awardee Pt. Navigator NCI Cancer Center Partner Patient

Cancer Disparities Research Partnership Program (CDRP) 5-year grant –The program components: Radiation oncology clinical trials infrastructure Research/Mentoring Partnerships Telecommunication – TELESYNERGY®

U.S. Map U.S. MAP

ULAAC Urban Latino African American Cancer Health Disparities Project Centinela Freeman Regional Medical Center

ULAAC OBJECTIVES Established the infrastructure to conduct cancer clinical trials Developed a lay patient navigator program primary goals To decrease barriers to receiving cancer care To examine the possibility of increasing voluntary accrual to clinical trials though the function of the lay navigator

CFHS Service Area

Our Patients

Our Partners Centinela Freeman USC UCSF RAND

Initial Navigator Concepts Cancer care is a complex and multi-factorial series of interactions with the healthcare system Patient navigators (culturally appropriate personal patient advocates) can facilitate patients through the care process. The concept of a patient navigator and the corresponding literature shows wide variance in definitions and implementation

INITIAL CONSIDERATIONS Lay Navigator program best fit our needs –Diversity of ethnicity and language in service area –Perceived cost All patients are offered navigation and continue to receive navigation whether they qualify for or participate in clinical trials

INFRASTRUCTURE Offices/Community Center Staff: –Debbie Karaman, MPH, Community Health Educator –Erika Cobb, Administrative Assistant –Hershel Knapp, PhD, MSW –Magdalena Serrano, USC MSW Intern –Nicole Harada, Clinical Trials Coordinator –Susan Richardson, RN, Oncology Nurse –Keith Andre, MA, Project Administrator Community Liaison: –MAB –CAB

Abnormal results DiagnosisTreatment Conclude Navigation Cancer Disparities Research Partnership (CDRP) Patient Navigation Model Outreach Patient Navigation Rehabilitation Abnormal Results DiagnosisTreatment Abnormal Finding Resolution Conclude Navigation Freeman, et.al., Cancer Practice, Cancer Diagnosis

LAY NAVIGATOR ROLE The navigator’s primary function is guiding cancer patients through the health care system Assisting with access issues Developing relationships with service providers Tracking interventions and outcomes

RECRUITING AND SCREENING PROSPECTIVE LAY NAVIGATORS Community Health Educator Networking: –Phone – –Community Advisory Board Screening –Phone –Orientation Session Prior to Training –Motivations

TRAINING COURSE The navigator 6 hour training course over 3 days emphasizes: –Investigating and implementing resources for patients in a timely fashion –Offering compassionate and non-judgmental communication…active listening skills –Completing appropriate records of all interactions on behalf of patient –Empowering patients to self-advocate in the healthcare realm

Training Program

Active Navigators

Ethnicity of Active Navigators

Navigators Who Are Cancer Survivors

Patient Navigation Data 67% accepted navigation

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

Ethnicity of Patients Accepting Navigation

Reasons for Declining Navigation

ASSESSMENT OF EFFECTIVENESS AND QUALITY ASSURANCE Navigators and patients queried multiple times and in various ways during the navigation process Assessments used to modify training and navigation process Assess effectiveness of various components of the program

ASSESSMENT OF EFFECTIVENESS ADDRESSING BARRIERS Identification of patient specific barriers to care Chart and navigation records are audited to determine time to solution of barrier The deficiencies receive follow up by staff and are identified and tracked in a database

Barriers to Care: Chart Audit PT ID# DxBarriersNavigator Assigned Date of Review Date closed Days open Resources Identified Did ULAAC staff assist Navigator? 009Colon1.Transportation13204/29/0504/30/052Taxi voucher program No 2. Financial13104/29/0504/30/052Beckstrand Cancer Foundation No

6 Most Common Barriers

Results of Clinical Trials Accrual 7 Trials Open –5 NCI/RTOG Sponsored Trials –1 NCIC Sponsored Trial –1 Multi-institution device Trial

Trial Enrollment

Accrual to Trial by Ethnicity

Clinical Trials Participation (14 month time period)

Reasons for Non Accrual to Clinical Trial

Clinical Trial Accrual/Navigation 23 Patients (24 Enrollments) 16 Accepted Navigation 7 Declined Navigation

Cancer Post-Treatment Survey 1.Are there quantitative differences between patients who received navigation versus those who did not in various QOL domains? 2.Are there patient perceived quality of care differences in the two groups?

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

CONCLUSION Ongoing Evaluation Will Provide Practical Information Regarding –Elimination of barriers to care –Quality assessment of lay navigation –Effects of navigation on accrual to clinical trials

“Still Too Separate, Not Yet Equal” … A. Epstein Most Existing Information On Disparity Focuses On –Ability To Afford Care –Knowledge, Beliefs, Preferences –Doctor/Patient Relationship Bach Suggests That Structural Features Of The Delivery System Contribute To Disparity in Quality

“Still Too Separate, Not Yet Equal” … A. Epstein Describing And Explaining Disparities Is Much Easier Than Devising Strategies To Reduce Disparities Researchers Should Shift Focus To Developing Infrastructure and Improving Policies That Will Reduce Disparities