Diversity & Inclusion
The Crohn’s & Colitis Foundation is committed to accelerating efforts within our organization and within the healthcare community to confront systemic racism and support communities of color.
All around us are harsh reminders of the pain, fear, and inequality that racism engenders. As a patient-centered healthcare organization, we recognize that racial injustice in our society, and the disparities it creates in healthcare and other areas, thwart our mission to serve all people with inflammatory bowel disease.
To do our part in driving critical change, our organization is working to capture the diversity in the IBD journey, through listening and learning, allowing us to better understand the needs and experiences of patients from diverse racial and ethnic backgrounds. We will incorporate these learnings into our work as we search for cures for Crohn's disease and ulcerative colitis, and strive to improve the quality of life of children and adults affected by these diseases.
Our Diversity & Inclusion Initiatives
In 2019 we began introducing a number of initiatives across our Foundation to help us proactively assess and address the gaps in access to healthcare among racial and ethnic groups, as well as our own internal staffing. Yet much more is needed, and we must continue to work to understand these inequities and take action through our research, education, support and advocacy initiatives. We are committed to these efforts, and are highlighting our activities in diversity and inclusion through this page, which will be updated as we make progress.
We updated our organizational values in 2019 to include an explicit focus on inclusion, which we take very seriously. Specifically, we strive to create a positive culture that welcomes, respects, and values differences while seeking out opportunities to safeguard against inequalities and disparities, and we actively seek out people of diverse backgrounds to inform the development of our strategies and activities.
In 2019 we kicked off the 5-year INPUT study, with funding from the Centers for Disease Control and Prevention (CDC), which will:
- Build an ethnically diverse registry of patients with diagnoses of Crohn’s disease or ulcerative colitis;
- Determine whether race is associated with different patterns of care, including delayed diagnosis and adequate treatment; and
- Estimate the incidence and prevalence of IBD at a national level using representative claims data that encompasses populations from all segments of the socioeconomic and geographic distribution of the U.S.
We partnered with Pfizer in 2020 to issue a request for proposals (RFP) focused on reducing health disparities in patients with inflammatory bowel disease. Ensuring patients receive optimal preventive care is critical to improving overall patient outcomes.
- Health care differences due to race for patients with IBD have been shown to contribute to suboptimal healthcare outcomes for minorities and low-income groups. Thus, it is critical to identify differences among the medically underserved to increase their access and ultimately improve IBD patient outcomes.
- This initiative aims to support projects that focus on innovative quality/process improvement projects and/or education interventions focused on multi-disciplinary health services approaches for the improved management of health maintenance and vaccine administration in IBD patients who are part of a medically underserved population.
- For the purposes of this RFP, we define underserved as patients who have experienced health and/or system disparities secondary to social determinants of health, which means they have been medically underserved based on factors to which they are born, grow, live, work and/or age (e.g. race, socioeconomic status, education, neighborhood environment, employment, social support networks, and/or access to health care).
- Study awards to be announced by end of August 2020
Education and Support
One of our first areas of focus for patient education—which ties very closely to the need to increase the diversity of clinical trials—is to understand the needs of Black and Hispanic/Latino populations, with respect to their perceptions of clinical trials and barriers to participation. Our specific objectives include identifying the partnerships needed in local communities to reach out to diverse populations, helping diverse patients understand the importance of clinical trials, developing initiatives to address the needs of the Black and Hispanic/Latino patients, and diversifying our team of clinical trial ambassadors.
- To kick off this process, we have engaged external consultants to train and educate staff on cultural competency and implicit bias. This training will be on-going as we continue to learn and educate our staff.
- Our next step is to conduct focus groups with Black and Hispanic/Latino IBD patients to better understand their concerns about clinical trials and their overall IBD journey.
We launched a Diversity & Inclusion task force in Fall 2019 to focus on 3 strategic objectives that we consider to be essential in the accomplishment of our mission:
- Build and sustain an organization that is reflective of the Foundation’s diverse patient population and the United States
- Create an inclusive Foundation culture, including:
- Emphasizing and encouraging diversity and inclusion within the organization’s staff and their individual experiences; and
- Implementing a model through which Foundation employees lead by example, promoting a diverse and inclusive community culture with local partners, volunteers, and constituents.
- Increase the awareness and education of Crohn’s and colitis across all communities, with an additional focus on people of color
This work will be integrated into our strategic plan, as we set goals that further our mission and commitment to the IBD community.
Over the last nine months we have worked with an external group of advisors on the National Scientific Advisory Committee (NSAC) Diversity & Inclusion task force, with the explicit goal of creating a strategy to increase diversity on the 2021-2024 NSAC. The Diversity & Inclusion task force recommended changes to the NSAC application process and recruitment tactics, which will be implemented in the Fall of 2020.
The Community Engagement initiative is generously supported, in part, by: