Fighting Health Inequality with Neighbors, not Nurses

Hermione Fraser is a hair stylist and a business owner. She gives advice daily on whether this cut or that braid, a dye-job or highlights will work. She has also given advice on something else: mammograms.

Years back, a program sponsored by the Arthur Ashe Institute for Urban Health called A Soul Sense of Beauty, trained hair stylists to provide health messages to their customers, including information on precisely when and where mammography is available. Fraser was part of it. One of her customers followed-up a conversation in the salon; the mammogram diagnosed breast cancer at a very early stage, when very treatable and the prognosis excellent.

That made a deep impression on Fraser. She now encourages shop owners and employees to become involved in the promotion of health.

“It makes you feel good,” she says, “especially when they come back and tell you they have discussed things with the doctor.”

A Soul Sense of Beauty is no longer an active program, but it continues to pay dividends, says Marilyn A. Fraser, CEO of the Arthur Ashe Institute for Urban Health and Assistant Professor in the Department of Medicine at the SUNY Downstate Medical Center. “For years following the program, some salon stylists have continued spreading the message about breast cancer—an enduring outcome of the program,” she tells City Limits. (The Frasers are not related.)

Experts say that while more effective doctoring and nursing, better equipment, and more responsive hospitals would help narrow New York City’s vast health disparities, these alone will probably not be enough. “We are in a place and at a time when community participation is needed—especially addressing the social determinants of health,” Dr. Fraser says. “When we think about prevention and catching things before they get to be chronic and before complications arise, it’s important that we reach people where they are.”

Hence the growing interest in what some call lay health advisers.

“Historical and ongoing racism and discrimination—and the resulting mistrust of medical institutions—make lay health adviser programs a good fit for many African-Americans,” says Rachel Shelton, an Assistant Professor of Sociomedical Sciences at Columbia’s Mailman School of Public Health.

“These programs are consistent with African-American historical social justice movements, where health activism is a central part of political culture and the importance of addressing health inequities, power, medical mistrust, and discrimination through community engagement is recognized,” Shelton adds.

A range of approaches

There are the multiple types of trained community members active today. There is no single person and no single agency in charge of them all.

All involve training, while each rests upon specific levels and types of training. For all or most, training may involve not only health information but also training on communication skills and additional areas important in fostering trust between communities and medical professionals. All are making a positive contribution. Much is shared in common among them. They include:

Community health workers: For example, at United Sikhs, a social service organization, community health workers bolster efforts in such areas as oral health, access to healthy foods, and access to medical care in the South Asian community.

Lay health advisers (also known as peer health advisers): For example, The National Witness Project (NWP), an evidence-based lay health adviser program, has proven effective in increasing breast and cervical cancer screening among African-American women.

Patient navigators: For example, the city’s Department of Health and Mental Hygiene supports patient navigators, multi-lingual and reflective of their local communities, to help patients overcome fears and to facilitate their experience with colonoscopy. This is a low-tech, paid position that involves working in a hospital and educating and helping patients understand the importance of screening.

Engaged religious leaders: For example, the city’s Office of Faith Based Initiatives has organized Interfaith Advisory Groups, which have proven effective in improving health. “Most of the leaders involved in this coalition have established a Health Ministry in their institutions, which are staffed by laypeople,” says Rev. Bruce C. Rivera of the United Church of Christ in the Bronx. During the early stages of the HIV/AIDs epidemic when many people recoiled from being tested, he had personnel from Department of Health test him as he stood in the pulpit on a Sunday, which led to many other people’s acceptance of testing.

 

Trained community residents working in the neighborhood and allied to a specific program, for example, the salon stylists who participated in A Soul Sense of Beauty.

No surprise that some groups of Americans have systematically experienced particularly great obstacles to health. Now, public health approaches are trying to deal with the disparities that result. If you want to deal with the disparities burdening “racial and ethnic minorities and the underserved,” you can’t restrict what you do to medicine as usual, says Nadia Islam, PhD, Section for Health Equity, Department of Population Health, NYU School of Medicine. You need “a paradigm shift.” You have to find ways of targeting how “social and structural” forces cause harm to health. And one of the ways of doing that is to have engaged community people actively mediating between the community and medical professionals.

Notably, several of the adviser initiatives benefit from support from the federal government’s Department of Health and Human Services or from New York City’s Department of Health and Mental Hygiene, which in turn receives support from the federal government. So what changing priorities with the arrival of new administration in the nation’s capital will mean for such programs remains an open question.

While the exact impact of the new president on these programs is unclear, “The election was pretty devastating for many of us in public health,” says Sandra Echeverria, Associate Professor and Deputy Chair, Department of Community Health and Social Sciences at the City University of New York. “And now more than ever, partnerships between communities and health professionals are needed to help protect programs from budget cuts” and “promote health in our most vulnerable communities.”

Obamacare (The Affordable Care Act) has “formally and explicitly provided for the activities of community health workers with particular focus on low-income, underserved, uninsured, minority, health disparity, and rural populations,” Islam says. And the Centers for Disease Control and Prevention (CDC) has been supporting programs in this area. “What will happen following the arrival of a new administration and a new Congress is anybody’s guess.”

Saving money, building trust

In addition to improving health and wellbeing, community health efforts have been shown to save money and to reduce unnecessary utilization of medical services, Islam says. For example, when the Bronx-Lebanon Hospital Department of Family Medicine instituted a program using community health workers as an integrated part of the health care team they achieved a reduction in both emergency department visits and hospitalizations.

Many people will seize an opportunity to do a good deed. Having a program in place may help. Take Barbershop Talk With Brothers, a program that aims to improve attitudes and self-efficacy toward consistent condom use, lower levels of sexual risk behavior, improve community empowerment, and decrease HIV stigma. Tracey Wilson, a professor at SUNY Downstate Medical Center, says: “It has just been so amazing how the barbers and barbershop owners have been so willing to partner with us. They are not gaining much financially from participating with us. I have seen that they really do want to help build health. Barbershop and small business owners are really open to working on health issues.”

“Our experience is that we have been welcomed by our community partners, who can leverage their role as trusted fixtures in their neighborhoods” to benefit the health of their customers and others in the community, Wilson says.

“One of the strengths of community-engaged programs like lay health advisers is that community people are typically perceived as insiders, who have received specialized health-related training,” and that means they are “more likely to be trusted,” Shelton explains. And being “within a person’s community or social network,” they are in a position to furnish “strong social support.”

 

There is evidence that these programs “build community capacity,” in part by “developing and training both leaders and advocates in the community. These are people who can broadly address multiple community issues, like accessing the healthcare system and negotiating the insurance landscape,” says Shelton. “So, there is frequently a ripple effect of their impact within the community, though this is often underappreciated.”

Trained community people—who come from the communities they serve, speak its language, know its idioms, and embody its customs—can help patients “overcome medical mistrust,” Shelton points out. In some cases, the lay health adviser has themselves survived or had close relatives and friends struggle with a disease or health issue.

They can tell the stories of what happened to the adviser herself and to friends and relatives. They are in a position to say, honestly and with integrity, “I felt that way, too” or “My experience was.” And they can teach patients how to speak with doctors and how to ask questions. Further, they can initiate a referral to a social worker or a physician when that is appropriate.

Lay health advisers can fulfill this role while working with a hospital, a city agency, a non-profit or foundation like the American Cancer Society, or a school of public health. To sustain such programs with limited resources or in the context of largely volunteer-based programs, the best combination may be having a community champion rooted in the community partnering with an academic or professional organization, Shelton says, explaining that her research suggests that such partnerships may increase the likelihood that lay health advisers will sustain their commitment over time.

Further, community health workers also can serve to communicate to professionals the interests, attitudes, and preferences of the community. For example, in the realm of public health or population health a portion of the research now being conducted was developed jointly by researchers and community participants. The approach is known as “community-based participatory research,” Echeverria says. “The goal is to have community voices heard.”

The role of faith

In some ways, the idea of non-doctors as health providers is an old one. Hospitals were first started by religious organizations, Rivera reminds us. The efforts of the Interfaith Advisory Groups are leading religious organizations to modify food menus, to talk about reducing salt intake, to sponsor karate for kids and walks in the city’s parks for everybody, and to train parishioners in how to use defibrillators and CPR.

“Faith based institutions speak to more people than all the other institutions in America combined,” explains Rivera. “Hence, we have the platform to promote healthful living and wellness in our congregations. But I must say that we leaders have not capitalized on the audience we speak to but we are certainly moving in the direction, while relying, in part, on collaborations with the Department of Health.”

These are “trusted community leaders” so “people do not suffer in silence,” explains Moses Mansur, director of the Office of Faith Based Initiatives at the NYC Health Department. Further, a positive side effect of this effort is that leaders of the various religions interact and work for common goals. “That is the beauty of the work we do. We bring people into a room, people of all different religious groups, together. It builds community. It certainly has added value,” Mansur says.

Being an effective health adviser does require some training, however.

The barbershop program, for instance, instructed these men on communication skills as well as on conflict negotiation tactics, “in case a conversation became uncomfortable.” The men each attended workshops, with co-leadership of the workshops by a man from the community, Wilson says.

Initially involving between 50 and 60 shops, the program has reached over 800 men who get haircuts in Brooklyn neighborhoods and has sought to empower them to serve as health advisers, to not only control their own health but also to spread the information to their sex partners, friends, children, nephews and nieces; “to leverage their position of authority in their lives to convey health prevention information,” Wilson says.

Of course, selecting people who fit well with each of New York City’s communities or subpopulations requires “a little savvy and understanding of the present realities of the immigrant experience,” Echeverria says. For example, “the unique health needs of different Latino groups is important and well-recognized,” Echeverria explains.

“There are social, political and historical factors that account for these differences,” although that doesn’t mean one has to be rigid about boundaries. “Even ‘ethnic enclaves’ have varying groups that co-exist and share similar experiences and thus can benefit from broad ‘place-based’ interventions that can lift up entire neighborhoods.”

 

Physical health issues like condom use and cancer screenings aren’t the only areas where lay advisers can play a role. Mental Health First Aid (MHFA) s a national program in which the NYC Department of Health and Mental Hygiene participates that offers free teaching of skills relevant to identifying, understanding, and responding to signs of mental health and substance use; while in addition seeking to reduce gun violence, the program answers such questions as “What shall I do?” and “Where can someone find help.”

In addition to general certification, there are specific modules for parents, teachers, and neighbors; for adults working in colleges and universities; for public safety, law enforcement and EMS personnel; for veterans and military families; and for people who interact with older adults. The modules are developed nationally by the National Council for Behavioral Health, which is currently creating a module for faith-based leaders, explains Maria Grazia Cervone, program director of Community Learning and Development at DOHMH All courses are free.

Whatever their focus, lay advisers are often motivated by a personal experience, for example, recovery from cancer or an experience with heart disease or stroke, whether their own or a close friend or relative’s. For some people the motivation is faith-related. For some, it is about giving back to their community. Shelton says.

“Many people experience a sense of empowerment and positive feelings from giving back,” Shelton points out. “This may initially motivate them to take on the role as a peer or lay health advisor, but the reinforcement they receive in helping others may also encourage their long-term participation in such programs.”

Not all of the help has to be formal: Family members already play a role as health advisers. And sometimes the advice need have little direct bearing on health. Some Bangladeshi families discourage women’s use of public transportation, leaving them dependent upon a friend or relative for a car ride to medical appointments, Islam points out. As part of the DREAM Project (Diabetes Research, Action, and Education for Minorities), starting in 2010 female community health workers from the Bangladeshi community in neighborhoods from Astoria to Westchester Square have taught some of these women to read subway maps and identify subway stations near home. Now these women have additional options when they seek medical care.