Background: Inflammatory bowel disease (IBD) that includes Crohn’s disease and ulcerative colitis is becoming much more common in minority populations, particularly in Black people. More importantly, Black IBD patients tend to have more severe forms of the disease. To date, Black patients account for two percent of patients in drug trials and one percent of research patients in IBD studies. Patient-centered research of IBD patients of color is needed to understand and address challenges related to their symptoms, outcomes and access to care, and to improve workforce capacity to provide appropriate and culturally competent care.
Proposed Solution to the Problem: This project builds capacity for IBD patients of color to engage as partners in patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) by creating needed infrastructure including identification of barriers and facilitators to research engagement, an engagement curriculum that empowers minority IBD patients to engage in research and a Color of IBD Board (CIB) committed to successful implementation and sustainability. The project team is based in Atlanta, Georgia. In partnership with a national patient organization (Color of Crohn’s and Chronic Illness) and two academic medical centers (South Carolina and Mississippi) with large Black IBD patient populations, the project team will create an infrastructure that empowers IBD patients of color and other stakeholders to engage in research.
Objectives: To build capacity for IBD patients of color to be partners in the development of PCOR/CER.
- Conduct listening sessions with IBD patients of color and family members to assess barriers to research engagement.
- Stakeholder engagement by CIB.
- Build research capacity among people of color with IBD via participation in a research capacity building curriculum.
Projected Outcomes and Outputs:
- A listening session report on symptoms and outcomes important to patients and barriers to research engagement.
- CIB – patient advisory board engaging stakeholders to facilitate IBD patients of color into research.
- Increased research capacity in minority IBD patients.
- Research capacity building curriculum training focused on PCOR/CER.
Achieving these outcomes will advance health equity for minority IBD patients.
- Short-term outcomes during the project period include: Development and implementation of a southeastern collaborative group to promote PCOR/CER for IBD patients of color. The project team will create an infrastructure that enables patients to engage in the research process from agenda setting to results dissemination.
- Medium-term outcomes (0-2 years post-project period) include: Increased research capacity amongst IBD patients of color in the southeastern regions of United States. These empowered patients will further drive a future research agenda for minority IBD patients. The social network of IBD patients and caregivers in the three-state research collaborative in the southeastern states will further amplify their voice for advocacy.
- Long-term outcomes (3+ years post-project period) include PCOR/CER for IBD patients of color will be designed and implemented with patients as partners across the full spectrum of the research process to ensure future research carried out will incorporate input from patients of color.
Patient and Stakeholder Engagement Plan: Minority IBD patients will be engaged in every project activity: as experts in listening sessions, as leaders on the CIB, and as participants in the research capacity building curriculum. A broader group of stakeholders will facilitate the engagement of IBD patients of color in research, family members and caregivers will be engaged through listening sessions; researchers, clinicians, health and social service agency members and policymakers through the CIB. The project team will leverage existing strong relationships and activate a strategic dissemination network of IBD specialists, primary care, research and community engagement to increase their reach.
Project Collaborators: This project will be led by the Division of Gastroenterology at Morehouse School of Medicine, in partnership with Color of Crohn’s and Chronic Illness, University of Mississippi Medical Center and Medical University of South Carolina. All three sites are medical centers caring for large number of Black IBD patients.