Bioethics Forum Essay
Working Around the System: Vaccine Navigators and Vaccine Equity
Mass vaccination is a complex system. Complex systems run as “broken,” non-ideal, systems. As states continue to expand access to Covid-19 vaccination to prioritized groups, members of the public are observing system problems firsthand. Heavy reliance of states, counties, and hospital systems on complicated online registration systems overlooks the “digital divide”: uneven access to technological skills and capacities, associated with age and with socioeconomic factors such as language or Wi-Fi access. Referrals to distant vaccination sites create further barriers for older, sicker, often poorer people who do not drive. Problems of system complexity overlap with problems of vaccine scarcity. Complexity problems will continue after vaccine supply increases, because more supply puts more pressure on a flawed system.
Vaccine navigators have emerged as a response to complexity. In health care and public health, a “navigator” is a worker who connects a person with resources difficult to secure on one’s own. In health systems, patient navigators help patients schedule and manage appointments and secure insurance coverage. The Affordable Care Act provided financing for navigators to help people enroll in insurance plans. The emergence of networks of volunteers – mostly young and middle-aged women – to help fellow citizens – mostly older or chronically ill – through complicated online processes to secure vaccination appointments close to home reflects a need for navigation. Recognizing these volunteers as navigators helps us to understand their role in the system.
Vaccine navigator networks include the Facebook-based New Jersey Covid Vaccine Info Group, which has more than 90,000 members. This network includes state residents looking for help, and volunteers who provide tips on booking appointments (stay up late and type fast) or who are searching for appointments on behalf of others. The website NYC Vaccine List offers similar information and updates for residents of New York City. Also in New Jersey, the nonprofit WGIRLS offers a “vaccine matchmaker” service for state residents age 65 and older.
Media reports about vaccine navigators tend to be framed in supernatural terms; they are angels or fairy godmothers. Vaccine navigators deserve praise – as humans, as good citizens, as part of humane, responsive public health systems. When we call decent, thoughtful behavior concerning others heroic or magical, we forget that we all have this capacity, which can be nurtured or thwarted.
Interviews with volunteers and discussions among members of the New Jersey Facebook group suggest a working set of norms and practices for vaccine navigators: Focus on connecting people eligible for vaccination with appointments. Share accurate information and correct mistakes. Explain how to zero in on vaccination sites geographically, to help people book appointments close to home. Don’t give medical advice. Don’t charge or accept money. Vaccine navigators debate the ethics of emerging issues, such as “holding” appointments while searching on behalf of several people at once, and using bots for speedier searches. They respond to frustration expressed as vaccine envy of the already-vaccinated or members of prioritized groups, while discouraging shaming.
Vaccine navigators have a role in improving vaccine equity: the challenge of responding to underlying inequalities that create barriers to health and health care. Navigators are aware that their rapidly expanding networks tend to develop in white digital spaces, mirroring entrenched racial segregation between cities and suburbs and within cities. Thus far, vaccine navigation works for people who are eager to be vaccinated, and whose barriers are primarily digital. Connecting minority communities with information, support, appointments, and sites will require a range of strategies. Community health centers, which have deep experience with trustworthy vaccine outreach and vaccination programs serving communities with barriers to health care, are now being directly supplied with Covid-19 vaccine through Federal health agencies. FEMA is adopting community health strategies, such as mobile health clinics, extended scheduling, and collaboration with community-based organizations, in launching new vaccination centers close to communities hard-hit by pandemic.
Mass vaccination is an opportunity to learn about what works to support vaccination. In weeks and months ahead, as vaccine supply increases, health-focused philanthropies could serve as conveners of remote meetings of vaccine navigators, community health centers, public agencies, and grassroots educators to share lessons from the field and refine strategies benefiting diverse communities.
Managing vaccine envy is part of improving vaccine equity. Keeping track of our moral emotions – the feelings of praise or blame associated with moral judgments – is important. We can agree that queue-jumping violates playground-level rules in how to respect others (wait your turn!) and recognize that reducing barriers to vaccination is more important than shaming individuals who may have gamed the system. We can avoid the morally unattractive look of “envying” another person who is exposed to greater risk of severe illness or death from Covid-19, due to age, chronic illness, living in overcrowded housing, being incarcerated, or other conditions we do not envy. And, we can take to heart political philosopher Joan Tronto’s observation that, in a democracy, “care is the work of citizens,” Vaccine navigators and others on the new Covid-19 frontline of mass vaccination are demonstrating how to respond to our times as good public health citizens.
Nancy Berlinger is a research scholar at The Hastings Center. She is the lead author of The Hastings Center Covid-19 Ethical Framework. Jeanne Marie Mirabella is a professional counselor, birth worker, and family caregiver. She is a vaccine navigator and vaccination site worker in New Jersey. The authors started their careers as colleagues in HIV/AIDS service.