This U2C funding opportunity announcement (FOA) is a National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) initiative to establish a novel national Stakeholder Engagement Innovation Center for advancing equity in type 1 diabetes research (SEIC-T1D). A primary goal of the SEIC-T1D is to accelerate equitable engagement of diverse stakeholders (specifically people from NIH designated health disparities populations) in T1D research; particularly those from communities that experience diabetes-related health disparities and live within the healthcare and social systems that negatively impact community members’ and patients’ health. The SEIC-T1D will provide highly specialized research resources to support investigators by fully embedding communities, people living with T1D, and other stakeholders into the full spectrum of research activities through expert consultations and education in principles and methods of community-engaged research. The SEIC-T1D will also establish a network consisting of diverse, multidisciplinary research investigators with expertise in T1D and community-engaged methods, community experts with lived experiences, and representatives of various health and other organizations deemed essential for addressing disparities and advancing health equity in T1D early detection and treatment.
Approximately 1.9 million people are currently living with T1D in the United States. Although the majority of people living with T1D self-identify as non-Hispanic White approximately one third of people living with T1D fall outside of that cultural group (as ascertained from new onset SEARCH for diabetes in youth data in the U.S.). Furthermore, according to the CDC, incidence rates of new onset T1D in youth are rising across all groups but are rising more in Black, Hispanic, and Asian/Pacific Island populations compared to Whites. Data indicate that people with T1D with backgrounds underrepresented in biomedical and behavioral research have worse glycemic control and increased morbidity and acute complications from their diabetes than peers of non-underrepresented backgrounds. In addition, people with T1D that experience disparities are less likely to be prescribed or adopt recent advances in diabetes technology, a cornerstone of advanced diabetes management. Unfortunately, these populations are often ‘hardly reached’ and are not engaged in NIH-funded research in crucial ways that would ultimately benefit them. For example, recent systematic review data indicate that although non-Hispanic Blacks comprise 9.3% of people living with T1D in the U.S., cumulative published clinical trials in T1D demonstrate only 2.2% representation of non-Hispanic Black people.
Promoting health equity research has been prioritized at the NIH to address long-standing inequities observed across many diseases. The NIDDK has initiated new efforts to address health disparities and advance health equity. One fundamental equity approach involves meaningful inclusion of diverse people and communities in developing the research priorities and activities that involve them, particularly NIH designated health disparities populations which are historically marginalized populations, and those with the highest proportion of diabetes-related morbidity and mortality. Unfortunately, as the statistics describe above, these populations are often ‘hardly reached’ nor engaged in NIH-funded research resulting in notable disparities in research participation which is interrelated to the stark disparities in health outcomes.
Stakeholder engagement that involves trust building and the use of culturally appropriate research designs, questions, and materials (i.e., outreach, recruitment, retention, and informed consent documents) is an important method to enhance and assess research outcomes including participation goals, health specific outcomes and sustainability. Strategies for effective stakeholder engagement vary based on the research complexity, questions, objectives, focus population(s), and needs. Examples of methods used to enhance stakeholder engagement include person-centered approaches such as design consultancy models and community engagement studios that involve customized community input sessions focused on specific cores or all aspects of a research project.
Finally, while meaningful, equitable stakeholder engagement is important for achieving project milestones such as achieving recruitment and retention targets and sustainability of successful interventions, it is not sufficient for achieving health equity. Additional strategies of meaningful stakeholder engagement with goals of achieving health equity include research principles embedded in certain methodologies (e.g., community-based participatory research), allotting time required to appropriately identify community, people living with T1D, family members and caregivers affected by T1D, or other stakeholder research needs and priorities, and tailoring strategies for equitable partnership development between researchers and community-based organizations and other organizations to ensure mutually beneficial processes and outcomes.
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Filed Under: Funding Opportunities