While Covid-19 has been the dominant public health crisis of the last two years, it certainly isn’t the only one. And while Southern’s Community Alliance for Research and Engagement (CARE) has been at the forefront of educating and encouraging New Haven residents on the pandemic, they have also been working hard on the many other health matters that impact the Elm City.
In fact, under the umbrella of their Health Equity Leadership Programs, CARE coordinates with researchers and local community members to bring about a better understanding of the scientific research going on right here through its Community Research Fellows program. And it works to bring about better awareness of the factors that particularly impact the health of Black and brown people in and around the city through the New Haven Health Leaders Program.
Both programs have recently been refunded through state and local grants, and the 2022 cohorts have begun with dozens of new participants, including, for the first time, a select group of high school students in a Future Health Leaders cohort.
“Both programs reflect our focus on addressing health inequity and the fact that the greatest disparities in health outcomes impact Black and brown communities,” explains CARE director Alycia Santilli.
The Community Research Fellows program was originally funded by a grant from the Patient Centered Outcomes Research Institute, with more recent funding from the Yale Cancer Center’s Office of Community Engagement and Health Equity and the state Department of Public Health. This year, 15 participants have joined the program that educates community members on all aspects of medical research and pairs them with a Yale Cancer Center Research team.
Over the course of nine months, the fellows learn about basic research terminology, methods, techniques, data analysis, outcomes. And they help researchers to address the hesitancy and mistrust of medical practitioners, and to interpret the data in the context of the community.
“It helps to level the playing field between researchers and community members,” Santilli explains, noting that both sides have something to learn from one another. “Often, researchers are studying breast cancer, for example, and what types of prevention have the greatest impact. But they’re only talking to their peers.” By going out into the community, they gain a different perspective.
Teretha Brooks, a life-long resident of New Haven, completed the fellowship in 2021. She was originally asked, because of her work with the NAACP, to identify potential participants and decided to apply herself because she’d always had a personal interest in health.
“It was really intense, a lot of reading, but I wanted to learn and I was working from home so I had some extra time,” says Brooks, who is also a wife and mother of four young adults. She was inspired by the team she worked with. “They taught me things that I have never heard of in my life, this girl from the projects, things that I never would even have thought about speaking about.” Brooks says the sessions that focused on medical literacy were the most impactful for her, “learning the things I need to understand to even understand what I don’t know.”
Her work on the team, meanwhile, helps researchers to understand why someone might hesitate to participate in research. “I know we have these unbelievably intelligent faculty members, and the incredible dynamics of their minds. And I know the tremendous impact they want to make…but they sometimes come into a community with a small incentive for research or to answer some questions. But the people never hear the results,” Brooks says. “People want to know ‘what are you doing with my information, what is it for?’”
One of the most powerful learning sessions, according to Santilli, is the lesson on research ethics. The fellows learn about historic cases of abuse that they might have been vaguely aware of, such as the Tuskegee Study or Henrietta Lacks. They learn how those documented abuses led to the Human Research Subject Protections Act and why there is so much regulation around research now.
Marquita Taylor, who completed her fellowship in 2019 and has become the assistant director of CARE, says she has seen the positive impacts. CARE is working with researchers particularly on how information is shared, not only in medical or scientific journals, but “what about a 2-pager to provide information to the non-science community, that contains a high level of information in a more digestible format that any person would appreciate?”
CARE, meanwhile, collects its own data to assess the effectiveness of its program. ”This is a partnership, and it helps to strengthen the relationship with the [Yale Cancer] Center and the researchers,” Taylor says. “We have seen mindset and process shifts happening, for sure.”
At the same time, CARE’s New Haven Health Leaders program and its recent spinoff, Future Health Leaders, is using similar strategy of educating and networking to address the well-known disparities that disproportionately impact health outcomes for Black and brown people in urban communities. Fifteen local residents are enrolled in the current cohort, joining 40 who have already completed the 9-month training and an experiential project.
“The New Haven Health Leaders is similar but different,” Santilli notes. “Some sessions are the same — on disparities and inequities, for example. But this is more of a grass-roots, neighborhood-based program. Participants network in their own neighborhoods, share knowledge and information through a health equity lens to encourage or discourage behaviors that lead to better health outcomes.”
Participants come to the New Haven Health Leaders program for a variety of reasons. Some are interested in health and wellness for personal or professional reasons. Others feel strongly connected to their neighborhoods or want to become more connected to their neighbors and see them thrive.
For each member of the cohort, there is a culminating project that they have chosen and refined with the help of CARE team. They begin by identifying an issue or concern that speaks to them and learn what might help and how to get there. Projects have included everything from one-day health fairs in a neighborhood park to community gardens that provide a place for people to grow and share their own produce.
“It’s amazing how hard the New Haven Health Leaders work, to do it by themselves and bring it to completion. For many, it’s outside their comfort zone, with things like rallying volunteers and support or fund development. By the end they develop confidence with asking,” Taylor says.
Networking is a huge part of the New Haven Health Leaders. Sessions, which have been virtual for the last two years but will hopefully return to in-person this spring, feature local community leaders from the board of alders, area churches, non-profits and other agencies with like-minded missions.
Projects this year are as varied as the members of the cohort, Taylor says. “Mental health is still huge, driven by how the world is and the difficulty of the last two years.” But there is also a focus on Black men’s health. One participant is forming a partnership with corner stores to offer more healthy choices and another is focusing on the need for after-school programs geared toward children with special needs.
Tempestt Latham was already interested in public health and working as a dental hygienist for Middletown’s Community Health Center Mobile Dental Clinic when they halted school visits due to Covid-19. She wanted to stay busy, to stay connected to her community, and to learn more about public health, so she enrolled in a master’s program at Goodwin University and joined the 2021 cohort of CARE’s New Haven Health Leaders at the same time. And, while Latham says she had been part of community event planning her job, this was her first experience doing the whole thing.
She embraced technology to focus her project around National Minority Health Awareness Month. She created a social media account entitled Health Happy Habits and hosted a virtual cooking lesson that also featured guest speakers.
Latham engaged Chef Jenna Martin from the Connecticut Center for Arts and Technology to demonstrate cooking a healthy meal of chicken, green beans, and sweet potatoes. The first 15 to register received their groceries for free, and that gave Latham a chance to check in with them in person. She posted joyful photos of her neighbors picking up their ingredients while also practicing Covid safety precautions. Dozens of people logged on to watch the demonstration that also included presentations by Sun Queen of New Haven Black Lives Matter, talking about how to practice self-care, and nurse Jazzmyne Tappin sharing the importance of regular check-ups to maintaining good health. Latham finished it off with a raffle for anyone who sent in a photo of their finished meals.
“CARE has been amazing!” Latham gushes. “Yes, they are research and numbers driven, but the amount of care that they put into gaining true feedback, to put forth programs that work, to give others a platform to learn and to advocate for themselves…that investment was why I wanted to be a part of it.”
Now she has been promoted to project manager at her agency, and is working part-time as university assistant (UA) for CARE. As a UA, she is helping to write curriculum for the new Future Health Leaders program in its first year.
Seven high school students were selected for this first cohort of the Future Health Leaders. Their process is similar in that they will receive training around the social determinants of health — access to quality health care, healthy food, and recreation; medical mistrust; insurance and costs, etc. And they will be given the opportunity to meet community leaders and contribute to the neighborhoods and networks around them. Many of the students who were chosen are already involved in their schools or local communities. Some have career aspirations in health care or even politics. The program is tailored around the students’ base understanding and interests, and Taylor says, “these students know or see or understand far more than we did at their age.”
The high schoolers were given the choice between completing a project or participating in an internship, with five selecting projects around immigrant health, mental health, and substance abuse issues. They will learn what makes a successful project, how to plan and organize, who and how to ask for help, and how to assess its impact — all of which mirrors the work of the New Haven Health Leaders and of CARE.
Now in its 15th year of existence and its 6th year with Southern, CARE is recognized for its leadership in health education and policy research. The state Department of Public Health has funded both the CRF and the NHHL because of the measurable positive outcomes, and because of their impact on workforce development. The New Haven Health Leaders program, with DPH funding is expanding outside New Haven’s borders to include Hamden residents this year and a separate program is being developed for Hartford.
CARE’s success is a reflection of the tireless work of Santilli, who began working as a research assistant when CARE was founded in 2007. Since becoming director in 2016, Santilli has raised more than $6 million in grants, much of which goes directly into the New Haven community through its programs and its employment practices. Hiring New Haven residents has been a priority of CARE. Of the 14 employees housed at SCSU, nine of them are New Haven residents and 12 of them are Black or Latinx, a practice that speaks directly to the understanding that representation is so important in understanding and improving the health of a community.