Learning from the community
How Yale researchers learn to ask the right questions.
About six years ago, the Yale Center for Clinical Investigation (YCCI) approached Sandra Trevino, executive director of Junta for Progressive Action, about partnering with Yale in clinical research. Junta is the oldest Latino community-based nonprofit organization in New Haven, and requests from Yale researchers seeking access to the city’s Latino population or to use Junta’s name to recruit volunteers were common. But Trevino often found the researchers unwilling to share information or engage in a meaningful way. Expecting the same “one-way street,” Trevino referred the request to a staff member and didn’t give it a second thought.
Her resistance turned to enthusiasm, however, when YCCI called her, along with other Junta staff members and leaders from the African Methodist Episcopal (AME) Zion Church. They wanted the community leaders to provide input on study design and recruitment materials for a research project on asthma. “I saw they were doing the walk and not just the talk,” Trevino says.
When studies include a diverse population and engage community members, the research leads to more effective treatments and interventions. The Cultural Ambassadors program—as YCCI’s collaboration with Junta and the AME Zion Church is known—is an example of how Yale researchers engage with New Haven’s community, which is more than 60 percent black or Latino.
“Health care providers may not know what it feels like to live with a disease and the challenges patients face,” says Marjorie S. Rosenthal, M.D. ’95, M.P.H., associate professor of pediatrics, co-director of the National Clinician Scholars Program (NCSP), and a former Robert Woods Johnson Foundation (RWJF) Clinical Scholar, who has been involved with research in the community. “Researchers have missed the mark at times by not asking their research participants about those questions before they start the research.”
Community-engaged research—a collaboration between researchers and community partners—is gaining ground as an effective way to conduct research that will translate into practice. It takes place across such School of Medicine departments as emergency medicine; internal medicine; laboratory medicine; neurology; obstetrics, gynecology, and reproductive sciences; pediatrics; and psychiatry; as well as the School of Public Health and the School of Nursing. Such initiatives as the Cultural Ambassadors program and the NCSP—a two-year research fellowship that has physicians and nurses working with community members—nurture partnerships that pave the way to better health. These collaborations have led to increased recruitment in clinical trials, improved trust between Yale and New Haven residents, and programs that use research findings as the basis for interventions that improve the health and well-being of the community.
Like Trevino, Reverend Dr. LeRoy O. Perry Jr., pastor of St. Stephens African Methodist Episcopal (AME) Zion Church in Branford, Conn., was initially skeptical of the Cultural Ambassadors program. He knew the history of morally questionable research done on blacks like the Tuskegee Syphilis Study. Distrust of the medical establishment has kept nonwhites out of clinical trials—they comprise fewer than 5 percent of participants in studies supported by the National Institutes of Health. With minorities suffering disproportionately from cancer, diabetes, cardiovascular disease, HIV/AIDS, and other ailments, their presence in clinical studies is crucial.
In 2008 YCCI learned through focus groups that blacks and Latinos were wary of clinical research. People who volunteer for clinical trials, participants believed, were drug addicts, desperate, uninformed, and incurable. Focus group members thought that they would be taken advantage of because of their race or class, were concerned that research is dangerous, and worried that researchers are less than forthcoming about the risks of clinical trials. On top of these concerns, discrimination and disparities in health care contributed to this mistrust of the medical establishment. Focus group participants also saw Yale as unapproachable and distant. YCCI took heart in one finding, however. Participants indicated that they might take part in research if they heard about it through family members, friends, churches, health centers, community centers, or health fairs.
The Cultural Ambassadors program follows a model devised by the Mayo Clinic in Rochester, Minn., in which local Hmong residents (refugees from Southeast Asia) were enlisted to recruit members of their community for clinical research. YCCI expanded on this idea to create the Cultural Ambassadors program in 2011 in partnership with Junta, which serves more than 4,600 families, and AME Zion, which has 17 local churches serving 5,000 families. The first order of business was to host training sessions that brought Yale faculty together with Junta and AME Zion representatives to discuss the design and implementation of research; regulations and laws that protect research participants; animal-based research; scientific misconduct; and the importance of participating in clinical research, especially for minorities. “The training was essential, because without it, you can’t answer questions regarding such issues as safeguards, informed consent, anonymity, and efficacy,” says Perry.
Fielding questions is one way that the Cultural Ambassadors inform their communities about clinical research. Through daily contact with parishioners and clients, AME Zion pastors and leaders and Junta staff members direct people to Yale research studies, sometimes even searching for studies online at yalestudies.org or calling YCCI to inquire about appropriate clinical trials. At fairs and community events, they bring their message to large groups of people. Armed with fliers and brochures in English and Spanish, they meet with people to broach the idea of participating in research, and they guide them through the process.
Cultural Ambassadors also meet monthly with researchers to learn about a study or to weigh in on a research protocol. The ambassadors have helped recruit participants for studies on the early detection of such conditions as learning disabilities, asthma, diabetes, cancer, and glaucoma. Many of these studies are aligned with health concerns identified as community priorities.
During these encounters, Cultural Ambassadors and researchers learn from one another. The ambassadors pepper the researchers with questions, but also explain how issues are perceived in their communities and the best way to approach potential research volunteers. They also advise investigators on study design. In a recent meeting about a study to use iPhones to improve diabetes management, the group suggested increased surveillance of patients with risk factors, intake interviews to assess barriers to care management, and a buddy system in which a friend or relative would receive alerts about a patient’s blood sugar. “I really feel like it is a true partnership, where our voices do matter and what we say is making a difference in the decisions that are being made in this larger institution,” says Trevino, who, along with other Cultural Ambassadors, has appeared in recruitment ads for clinical research.
The program, which has recently been adopted at Duke University, has improved minority participation in research. When Cultural Ambassadors are involved in studies, minority participation averages between 37 and 65 percent. When they’re not involved, minority participation drops to between 2 and 3 percent. Beyond that, the level of trust between the community and the School of Medicine has increased—Cultural Ambassadors now encourage members of their community to participate in research, helping to dispel some of the myths that they themselves had believed just a few years ago.
Time, trial, and error
Long before the Cultural Ambassadors program, School of Medicine researchers had been engaging with residents, involving them in what is now known as community-based participatory research (CBPR). For more than 40 years, Yale was a site of the RWJF Clinical Scholars Program, a two-year fellowship that includes community-partnered research. This program is being phased out in 2017, but Yale and three other institutions have established their own version of the program, the National Clinician Scholars Program (NCSP).
Under the RWJF program, a 30-member community advisory steering committee comprising leaders and representatives from New Haven community organizations, the City of New Haven, community health clinics, and Yale faculty, meets every month to establish research priorities, work with researchers on study design, and build community-academic partnerships. “The relationship has been one of evolution and a learning exchange,” says Natasha Ray, M.S., core services manager of New Haven Healthy Start at the Community Foundation for Greater New Haven. She co-chairs the committee with Marcella Nunez-Smith, M.D., M.H.S. ’06, associate professor of medicine and of epidemiology, core faculty member of the NCSP, and a former RWJF Clinical Scholar.
The value of this collaboration became apparent about the time of Hurricane Irene in 2011, which coincided with an upswing in gun violence in New Haven. It occurred to Barbara Tinney, M.S.W., co-chair of the steering committee, and Nurit Harari, M.D., FW ’13, then an RWJF Clinical Scholar, that the response to natural disasters might also work for gun violence. “That was transformative,” says Emily Wang, M.D., associate professor of medicine (general medicine), “to think of gun violence as something that can be prepared for and mitigated.”
Beginning in 2014, Wang, a second pair of RWJF scholars, and Maurice Williams, a YCCI staff member, trained 17 community members in New Haven’s Newhallville and West River neighborhoods to gather data from more than 150 neighbors. They asked not only about exposure to gun violence but also about whether their neighbors prepared for it. Most had heard a gunshot, a third had witnessed a shooting, and nearly 60 percent had lost a friend or family member in a shooting. Most of their neighbors had established a family plan that included discussing gun violence with their children or buying burial insurance. “Unless you include community members from beginning to end and honor their skills and expertise, you won’t get to the right questions,” says Wang, who is a core faculty member of the NCSP. “We would never have thought of including questions about preparedness without their input.”
The study found a connection between a community’s ability to leverage social ties and rebound from adversity, and lower exposure to gun violence. The next set of scholars, Alicia Agnoli, M.D., M.P.H., and Anita Arora, M.D., M.B.A., is taking the research a step further, trying to strengthen bonds among community members, over half of whom knew none or a few of their neighbors. Through trial and error, they settled on a monthly intervention—Game Day—the brainchild of Ann Greene, a community research liaison with the NCSP and a West River resident, and Victoria Spell, also a community resident.
At the Game Day held in March at the Barnard Environmental Studies Magnet School on Derby Avenue, about 50 West River residents ranging from toddlers to grandparents gathered to play games, shoot baskets, and socialize over pizza. Intended to reinforce the notion that West River is a safe neighborhood in which to socialize, it was an opportunity for them to get to know one another on a deeper level. “We don’t have a lot of places for children and families,” says Joseph Vidro, who walked to Barnard in the freezing weather with his 13-year-old son. “We get to know each other as a village so we can help each other out. It’s great that the community comes together.” Greene has noticed a change in the way her neighbors interact. “I found that we have much more intimate and interesting conversations than we ever did when we just ran into each other on the sidewalk,” she says.
Along the same lines, researchers looked into which skills residents possess and which they’d like to learn. “In neighborhoods like mine,” says Greene, “people don’t realize how much human gold there is, how many talents, because they’re not necessarily tied to a degree or high-status occupation.” Like Game Day, Skills Day brings people together and encourages neighbors to help each other. Follow-up research will determine whether these activities have increased resilience and strengthened bonds. In another arm of the research, Wang and Andrew Papachristos, Ph.D., associate professor of sociology, are using police data on gun violence to identify pockets of residents of high-risk areas who have never been involved in gun violence. The idea is to identify those characteristics that protect neighborhoods from violence and figure out how to apply that knowledge elsewhere.
A widespread problem
While gun violence is often concentrated in certain areas, homelessness remains an issue in New Haven—in 2016, more than 600 people were living in emergency shelters, transitional housing, or on the streets. In 2010, RWJF Scholar S. Ryan Greysen, M.D., M.H.S. ’11, M.A., now at the University of Pennsylvania Perelman School of Medicine, wondered how the homeless people he saw in the emergency department made the transition from the hospital to the shelter. Working with the Columbus House shelter, he surveyed homeless clients and found that they often left the hospital without a clear understanding of how to obtain prescription medications or follow up with health care providers. Often, he found, they were discharged too late to be admitted to a shelter. When Greysen’s fellowship ended, Kelly M. Doran, M.D., M.H.S. ’13, now at New York University School of Medicine, continued the project, gathering data from the hospital to determine how to improve health care for homeless patients after discharge.
As of 2013, Columbus House has a Medical Respite Program—the first in Connecticut. Up to 12 clients can recuperate from surgery, an illness, or an injury in a private room while receiving skilled nursing care from home care organizations. They also get help connecting to community services, transportation to appointments, and assistance with finding housing.
Medical respite is a new field. There are only about 70 programs in the country, with differing models of care. Alison Cunningham, chief executive officer of Columbus House, was at first skeptical, but she offered the program unused space on the shelter’s third floor. Before the program started, hospital readmission rates for homeless people in New Haven were 51 percent. Today, they’re down to 17 percent, and only 4 percent of respite patients return to the streets. The program also saves Medicaid about $12,000 per patient. “It has opened our eyes to a different way of thinking of the relationship between housing and health care, and how important it is for people’s health for them to be stably housed,” says Cunningham. The program, she added, would not exist without the RWJF Scholars.
Ensuring that health care solutions meet the most pressing needs of the community is one of the goals of community-based research. At a recent Cultural Ambassadors meeting, Paul Taheri, M.D., M.B.A., deputy dean for clinical affairs and CEO of Yale Medicine, sought the group’s input on possible ways to reduce the burden of chronic diseases in the community. The conversation was a first step in thinking about what kinds of studies to design, the type of data that would need to be collected, and how the community could help. Ambassadors asked questions and offered suggestions about how to delve deeper into New Haven’s health issues. Taheri plans on meeting with the group again during the process of designing a research study. Says Junta’s Trevino: “Our partnership has shown me that our needs matter and our voices are heard.”