Patient Advocacy for Healthcare Quality Earp, French, Gilkey

1. Patient Advocacy for Healthcare QualityEarp, French, Gilkey Chapter 5 Partnering with Lay Health Advisors to Improve Health Equity

2. Understanding Patient Advocacy in the Context of Health Disparities • Regardless of individual financial resources or cultural background, each of us is equally entitled to receive respect, trust, compassion and clear communication from our healthcare providers. • However, patient advocacy efforts that remain tightly focused on providing services to individual patients as they enter the healthcare system for treatment of acute disease are exclusionary by design. • To achieve greater equity, patient advocates must expand the scope of their efforts to reach individuals from communities estranged from medical systems.

3. Patient advocates work for health equity by: • Improving outreach to people who cannot find their way into health services because these “systems” are inaccessible -- culturally, financially and/or physically. • Elevating the importance of patient-centered, culturally sensitive health care for those most in need: ethnic and cultural minorities, people with disabilities, and the under and un-insured.

4. Evidence of Health Disparities: The case of Black Americans • For Blacks, virtually all health indices are worse than for whites. Life expectancy for Blacks is lower at birth and at every age (Hoyert, Heron, Murphy, & Kung, 2006). • For Black women breast cancer death rates are higher than they are for whites, although death rates for both groups are dropping (Smigal et al., 2006). • Colorectal cancer incidence increased 11% for Blacks between 1975-2000 while decreasing 2% for Whites. Blacks are also more likely to die from colorectal cancer (Ries et al., 2006).

5. Historical Context of Health Disparities • 1964 Civil Rights Act prohibited payment of federal funds (including Medicare payments) to segregated institutions. • Most hospitals desegregated as a result, but at the same time many historically Black hospitals closed. (Institute of Medicine, 2002)

6. Other Major Barriers to Healthcare • Availability of medical facilities and providers • Distance from medical facilities and availability of public transportation • Physical accessibility of facilities and services • Personal wealth and health insurance status • Culturally-bound factors, including values, beliefs, practices • English proficiency and literacy • Trust in the system

7. Advocacy Response: The Example of Lay Health Advisor Programs Lay Health Advisors (LHAs) are: • A public health movement to recruit and train groups of lay individuals, usually women, to provide one-on-one information and support about pressing health needs of disadvantaged populations. • Organized mostly in communities of color and in low-income neighborhoods to take on the problems of persistent inequalities in access to health care and to stimulate greater awareness and activism about health issues at the neighborhood level. • Also known as “community health workers”

8. Advantages of LHA Programs • Involve the intended beneficiaries as collaborators • Community-tailored methods result in services that are locally relevant and sustainable • Assets-based approach makes use of “natural helpers” and existing community networks

9. Case Study: The North Carolina – Breast Cancer Screening Program (NC-BCSP) • Recruited nearly 200 women in rural communities in eastern North Carolina to serve as LHAs • Provided 10-12 hours of training about how to give social support to older African American women with the goal of increasing breast cancer screening rates • Coordination by paid Community Outreach Specialists based in health departments or community health centers

10. The NC-BCSP LHA program provided: • Cultural mediation between communities and health and human services systems • Culturally appropriate health education • Informal counseling and support • Advocacy for individual and community needs. • Clinical and social services • Individual and community capacity building

11. Guiding Questions in Patient Advocacy for Healthcare Equity • How often does poor patient-provider communication and lack of cross-cultural awareness prevent patients from making informed choices about preventive care? • Are patients sometimes deterred from returning for follow-up visits, counseling or treatment because of a health care provider’s lack of personal or cultural sensitivity?

12. Guiding Questions in Patient Advocacy for Healthcare Equity 3) How often do healthcare services disregard or turn away from the needs of individuals or population groups outside the mainstream? 4) From pre-natal care to end-of-life, are support and allied health programs compatible with the cultural and physical needs and preferences of all populations?