Using Qualitative Evaluation to Strengthen Hepatitis B and C Health Promotion By Patient Navigators for Hard-to-Reach Populations

Background: Over 250,000 New York City (NYC) residents are infected with hepatitis (Hep) B or Hep C, viral infections that can lead to liver disease, liver cancer and premature death. Many of those at risk are unaware of their status and are not in care, even though treatment can reduce illness and death. Hep B and C disproportionately impact people who inject drugs (PWID), are homeless, or are foreign-born, all of whom face unique barriers to care. Peer and patient navigation programs have been found to support patient engagement in health care. However the field of hepatitis patient navigation is new, and standards and resources to support this professional role are in early stages of development.

Program background: Since 2012, the NYC Health Department Viral Hepatitis Program (VHP) has developed and managed hepatitis patient navigation programs in partnership with community health organizations citywide, reaching more than 2,000 patients in FY2015 alone. The NYC Hep C Peer Navigation Program provides PWID with prevention and linkage to testing and care services, while the Check Hep B and Check Hep C Patient Navigation programs employ a college level staff to provide linkage-to-care and clinical care coordination services to PWID, low-income and/or foreign-born chronically infected individuals. In 2015, VHP developed new resources to support hepatitis patient navigators to overcome barriers to care, informed by program evaluation data.

Evaluation Methods and Results: In 2015, qualitative feedback was solicited from 14 NYC Hep C Peer Navigation Program peer navigators and 10 Check Hep B and C Program Patient Navigators via focus groups or during monthly program management meetings. The focus groups conducted with peer navigators revealed the following barriers to care: perception of Hep C infection as inevitable and not urgent; lack of awareness of new treatments with fewer side effects; perception that treatment coverage would likely be denied by health insurance; and past experience of provider stigma against drug use. Similar barriers were reported by Check Hep C patient navigators. Barriers reported by Check Hep B patient navigators included misconceptions of Hep B treatment, fears of deportation, and lack of awareness of low-cost care and treatment coverage options.

Conclusions: Evaluation findings led to the development of new patient navigator guides and bilingual patient educational materials addressing barriers such as: Hep B and C health promotion guides; a health coaching pocket card; a “roadmap” illustrating the steps from Hep C screening to cure to help set realistic timeline expectations; and a pocket card listing patient rights, including the right to accompaniment by a navigator at medical visits. To date, the materials have been well-received by navigators and have been requested by organizations around the nation.

Implications for research and/or practice: Qualitative evaluation can inform the development of peer and patient navigation resources necessary to overcome barriers to care commonly reported by Hep B and C patients and navigators. Resources piloted in real-life programs can later contribute to the development of standards for the new field of hepatitis patient navigation.