Introduction

Eosinophilic gastrointestinal diseases (EGIDS) are a group of rare disorders, and little is studied regarding their demographic characteristics. Current data is primarily collected in the United States and Europe, which restricts the applicability of these findings to other populations. 

Eosinophilic Oesophagitis is the most common among other EGIDs and is known for mainly affecting white males. 

Considering the average diagnosis delay is around six years, it is essential to identify and treat the conditions early to prevent complications. Due to the underrepresentation of data on non-white communities, the delay may be even longer among them.

CEGIR's Initiative for Diversity

In August 2020, the NIH-funded Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) established a diversity committee in response to these social inequities in health care.

CEGIR aims to develop an understanding of underrepresented populations of patients with EGIDs, identify barriers to their research, and integrate this knowledge into their work to serve all patients with EGIDs better. 

The main goal of this highly proactive group is to promote awareness of issues related to diversity, equity, inclusion, and accessibility (DEIA) in CEGIR-associated research. The committee includes 34 members and meets twice a month.

The agenda of the meetings includes but is not limited to defining the demographics of EGIDs, examining health disparities in care and developing tools and models for studying and reporting data related to the DEIA.

EOS Network is proud to be part of CEGIR, whose members continually try to find answers to challenging questions and improve their processes at every opportunity. This has been demonstrated by their commitment to ensuring inclusivity and diversity are at the heart of the consortium's ethos and future research.

One of CEGIR’s regular meetings. Amanda Cordell, CEO of EOS Network, and Olena Filatova, the Communications Officer, represented EOS Network.

Building a Knowledge Base

The committee set a research agenda to translate DEIA concepts into action and change the current research landscape. Three main areas were chosen: understanding EGID demographics, developing a reference tool following the AMA manual of style, and exploring clinical observations related to the disparity in EGID care.

They created an educational platform with a reference library and speaker series to bridge gaps in understanding of DEIA within research. The library is filled with rich, up-to-date resources, and the speakers, workshops, webinars, conferences, and seminars encourage discussions on DEIA topics, fostering awareness and learning within the CEGIR community.

Virtual meetings and various communication tools, including the Diversity Corner on the CEGIR website, help build a sense of community. Emphasising proactive inclusivity, the committee includes members from various career stages and diverse backgrounds.

Research Projects and Achievements

One focus has been challenging assumptions about EGID demographics, such as biases and stereotypes that may affect diagnosis and treatment. The research group conducted a systematic review to identify the demographics and created a checklist to promote appropriate reporting practices.

Conclusion

Developing mission and vision statements, educational platforms, a research agenda, and communication systems has strengthened the infrastructure to address DEIA within CEGIR. These efforts contribute to a more inclusive approach in all EGID interactions, research, and education.

In response to the social inequities that exist in health care, we formed a diversity committee at CEGIR (Consortium of Eosinophilic Gastrointestinal Disease Researchers) to examine systemic racism and implicit bias in the care and research for our patients with EGIDs. In this manuscript, we describe our journey, highlighting our initiatives and listing our achievements to date, which we hope will inspire other researchers to enhance diversity, equity, inclusion, and accessibility in their fields.

Mirna Chehade, MD, Icahn School of Medicine at Mount Sinai, New York, NY, Principal Investigator.

Achievements, Challenges and Future Directions

Key Achievements

CEGIR's diversity committee has successfully established a virtual platform that has shed light on several critical issues, such as assessing the diversity within CEGIR membership. Their work has improved the understanding of DEIA (Diversity, Equity, Inclusion, and Accessibility) in EGID research (Figure 1.)

Future Directions

The committee plans to continue existing studies and explore new avenues based on recent findings. They hope to identify gaps in knowledge and care, which could lead to funding opportunities. This is essential to support the researchers and the infrastructure for these initiatives.

By implementing and sharing the results through publications, the committee can influence various aspects of EGID patient care, such as prompt diagnosis and management, and promote diversity in clinical research.

Primary Goals

The committee's primary goal is to align CEGIR's work with its mission statement, which is read at every meeting. 

We will develop an understanding of cultural, ethnic, and racial diversity and structural racism, particularly as it pertains to underrepresented populations of patients with EGIDs; strive to examine systemic and implicit biases; identify associated barriers to our research; and integrate the knowledge into our research studies and educational initiatives, so that we can better serve all patients with EGIDs.

Mission statement, CEGIR diversity committee

The focus is on opportunities for underserved populations and underrepresented groups through career development, patient and provider education, and funding DEIA-related research studies.

The effort to address disparities in EGID care is an ongoing process, and CEGIR is committed to shaping the future of patient care and research in this field.

Read the full publication here

Last updated: 09/11/2023