Roughly 11 percent of people living in the United States have type 2 diabetes and nearly 40 percent of adults have prediabetes, according to the Centers for Disease Control and Prevention. People from historically excluded racial and ethnic groups, particularly Black Americans, are more than twice as likely to die from diabetes than their White counterparts.
Research shows that culturally tailored interventions that are conducted in partnership with community leaders and organizations are very effective in improving diabetes outcomes, specifically among low-income and racial and ethnic minority populations.
To generate more community-engaged diabetes research, the National Institute of Diabetes and Digestive and Kidney Diseases, a division of the National Institutes of Health, has pledged $13 million to NYU Langone Health, the Albert Einstein College of Medicine/Montefiore Health System, and the David Geffen School of Medicine at UCLA to create the National Center for Engagement in Diabetes Equity Research (CEDER), the first of its kind.
Co-led by Nadia S. Islam, PhD, associate director for community education at the Institute for Excellence in Health Equity at NYU Langone, CEDER will create a centralized national infrastructure designed to foster community engagement and the participation of diverse populations in type 2 diabetes research.
“We are incredibly grateful for this funding and excited to build the first center of its kind that provides researchers, clinicians, and other important community partners with the tools and support to advance equitable diabetes research and care in communities that need it the most,” said Dr. Islam, who is also an associate professor in NYU Langone’s Department of Population Health.
Having implemented numerous community health worker trials to control hypertension and type 2 diabetes across New York City’s diverse communities, Dr. Islam says that CEDER’s goal is for researchers to draw from a rich repository of evidence-based interventions that can be culturally adapted, scaled, and implemented in different communities. “It is our hope that everyone committed to advancing equity in diabetes research and care can access the support and mentorship they need.”
These cooperative projects help to ensure that research is based on a relationship of trust and is relevant and impactful, adds Dr. Islam.
“To reduce diabetes-related disparities, we must authentically prioritize community concerns and strengthen the trustworthiness of our academic and healthcare systems,” said Earle C. Chambers, PhD, MPH, a professor and the director of research in family and social medicine at the Albert Einstein College of Medicine and Montefiore Health System. “By ensuring our community partners join us as equals, with a real leadership role in creating new intervention strategies, we have a significantly greater chance of developing approaches that meaningfully influence behaviors and reduce racial, ethnic, and socioeconomic disparities in type 2 diabetes in this country.”
Type 2 diabetes can also lead to heart disease, kidney failure, nerve damage, and blindness. By 2025, costs associated with uncontrolled diabetes are projected to reach an estimated $17 billion.
“For chronic conditions such as diabetes, lived experiences through the eyes of patients and caregivers can truly enhance the quality of research,” said Arleen F. Brown, MD, PhD, professor at the David Geffen School of Medicine at UCLA and a clinician at Olive View-UCLA Medical Center. “Through community engagement studios, we can incorporate the different perspectives of patients, caregivers, clinicians, researchers, and others to help optimize how diabetes research is designed, implemented, and disseminated.”
In addition to accessing an online repository of resources, researchers will be able to attend studio sessions, where they will be paired with community partners to better learn how they can work together in the development, implementation, and dissemination of community-engaged research aimed at the prevention and treatment of type 2 diabetes. The aim, according to Dr. Islam, is for CEDER to hold 50 studio sessions over the next five years.
The two community partners on the project are Health People and Visión y Compromiso.
“Health People is very pleased to join our collaborators to ensure the interventions we develop empower our community members to lead healthier, safer, and more productive lives,” said Chris Norwood, founder and executive director of Health People, a community-based organization located in the South Bronx that is partnering on the grant. “We look forward to joining this center and sharing our expertise in peer-to-peer education, innovative curricula, and instructive workshops to the team to make sure we develop programs that are meaningful to and effective for members of our community, particularly those with limited education and work experience.”
“We appreciate the opportunity to collaborate with this coalition in alignment with our work to promote community voices in pursuit of health equity,” said Miriam Hernandez, a workforce training manager at Visión y Compromiso, which was founded 24 years ago in support of promotores, also known as community health workers, and other grassroots community leaders working to improve community wellbeing. “We look forward to leveraging our large network along with the linguistically relevant resources and trainings we provide to build local capacity, develop programs, support advocacy, and promote community strengths.”
CEDER will also train researchers in health equity and implementation science frameworks, review grants, and facilitate in-person and online trainings and lectures.
CEDER’s ultimate mandate, according to Dr. Islam, is to have more communities informing researchers of the types of interventions needed to prevent and manage diabetes as opposed to having these ideas originate from academia.
CEDER is funded by the National Institute of Diabetes and Digestive and Kidney Diseases.
Additional partners include the American Diabetes Association, Visión y Compromiso, and Health People, along with more than 25 academic medical centers, schools of public health, and community-based organizations across the country.