Health Disparities Researcher Self Portrait: Jessica Cooke Bailey, PhD, MA

by Jessica Cooke Bailey, PhD, MA, Assistant Professor, Department of Population and Quantitative Health Sciences, School of Medicine, Case Western Reserve University, Faculty, Cleveland Institute for Computational Biology 

This article is a Health Disparities Researcher Self Portrait authored by a CTSC-supported, health disparities researcher.

Jessica Cooke Bailey
“My research program now prioritizes groups that have been historically underrepresented in research.” - Dr. Jessica Cooke Bailey

Early Career

Early in my academic career, I primarily focused on how genetics contributes to complex diseases that are generally more common in African-descent populations. Completing my postdoc and starting the CTSC KL2 program, I was challenged to take an interdisciplinary view of my work, so, during the KL2, I completed my Master of Arts in Bioethics. Through that curriculum, I took the CWRU Health Disparities course, which helped me view my work through the lens of health disparities, specifically on how underserved, underrepresented communities are affected by complex diseases and underrepresented in relevant research.

For one such disease, glaucoma is the leading worldwide cause of irreversible blindness. The most common form is primary open-angle glaucoma (POAG), which has over 5x higher risk among African diaspora populations, and differences between population groups persist even when accounting for various social determinants of health. I began to study glaucoma because of the large genetic component (up to 85%). Together with the largest glaucoma genetics consortia in the United States and in the world, we have examined DNA of tens of thousands of individuals to better understand genetic contributors to POAG. Often, however, focus has centered on the most accessible samples, which are from individuals of European descent, despite that it is known that POAG is more prevalent, more aggressive, starts at younger ages, and is more likely to cause blindness in people of African descent. My research program now prioritizes groups that have been historically underrepresented in research.

Current Research Focus

My research now takes a comprehensive approach to integrate trans-ancestral genomic and health data to dissect the genetic and non-genetic mediators of POAG. I hope to: characterize and quantify clinical, lifestyle, environmental, and genetic differences across diverse groups, determine how genetic ancestry mediates genomic risk, and build models for effective translation of risk information to clinical, individual, and community stakeholders.

To better understand why there are fewer diverse people in POAG genetic studies and what non-genetic risk for POAG might look like, I partnered with the Prevention Research Center for Healthy Neighborhoods. Supported by a CTSC Annual Pilot Award, we formed All Eyes on Us to better understand perceptions, values, and barriers to vision care in a racially and socio-demographically diverse Cleveland community. We formed an intentional collaboration with University Settlement, a community resource center with a 92-year history in Broadway-Slavic Village, the second poorest neighborhood in Cleveland. Our team collaborated with University Settlement to establish a community advisory board (CAB) who advised us on developing an interview guide to understand and explore perceptions, values, and barriers to vision care in a racially and socio-demographically diverse community. The CAB, University Settlement, and our team recruited community members who completed 60 qualitative interviews to better understand perceptions of, barriers to, and values around vision health and care. We plan to submit manuscripts in the following year summarizing (i) our community engagement process and (ii) our findings and the implications. We proposed and were selected to deliver a 105-minute team-presented symposium, entitled Nothing about us without us: Lessons learned from a Community-Engaged Translational Study in Access to Vision Care, at the 2021 Association for Clinical and Translational Science meeting. We also presented posters at ACTS (DOI: 10.1017/CTS.2021.596) and at the Association for Research in Vision and Ophthalmology (ARVO) conference. We are in the process of summarizing our findings in multiple manuscripts.

University Settlement
University Settlement is a community resource center with a 92-year history in Broadway-Slavic Village, the second poorest neighborhood in Cleveland.

Together with University Hospitals Ophthalmology, I started the Study Integrating Glaucoma and eye Health Translation (SIGHT) to increase representation of African American DNA in vision research. Recruiting at multiple Ophthalmology clinics in Cleveland with Dr. Edward Burney, my goal for this study is to integrate clinical, health history, physical activity, lifestyle, cognition, quality of life, and genetic data to illuminate a comprehensive understanding of glaucoma risk. Unfortunately, COVID significantly impacted our participant recruitment potential, but we have been fortunate to experience 25% participation.

Much like in other common, complex diseases, POAG genetics is heavily dominated by European-descent data; I have lamented this over the last several years (e.g., doi: 10.1007/s40142-017-0131-8). To increase diversity in this space, I collaborate with the Department of Veteran Affairs (VA) Million Veteran Program (MVP), a biobank of more than 850,000 Veteran DNA samples with de-identified VA electronic health records. Our team has focused on  electronic phenotyping and statistical genetic analyses of POAG, unique within the larger MVP research effort. We were the first to publish an EHR-based case-control POAG phenotyping algorithm that performed consistently well in White and Black or African American individuals (doi: 10.1080/09286586.2021.1992784). Anatomical and ocular profile differences between ancestral groups may influence POAG diagnosis rates, but we were able to develop an algorithm that was robust to capturing cases from both groups. We have applied this algorithm to the vast MVP data resource to lead one of the largest ever genome-wide meta-analysis of POAG in people of African descent. Building upon our work in the MVP, I am PI of an NIH R01 in which we are leading the largest worldwide effort to examine genetic data from people of African descent with and without POAG.

Jamaica Eyes

Jamaica Map Flag
According to 2010 autosomal genealogical DNA testing, about 78.3% of Jamaicans are of Sub-Saharan African descent.

To expand what is known about glaucoma among African-descent populations, my team collaborates with a Jamaican Ophthalmologist to expand what is known about the clinical aspects and prevalence of POAG in Jamaica. In addition to establishing the clinical profile of POAG in Jamaica, we envision adding treatment, compliance, patient education, and genetics arms to this study in the future.

From these experiences, my team was compelled to propose a session to the International Society for Eye Research highlighting the lack of and need for diversity in vision research, and ways of correcting this wrong. In one of my most exciting achievements to date, this session, entitled SIGHT: Studies of International Glaucoma and Health Translation, Considerations and Approaches to Recruiting Underserved and Special Populations in International Glaucoma Research was accepted to the 2022 (rescheduled to 2023) meeting. International colleagues will discuss challenges of and opportunities for recruiting study participants from historically underrepresented groups in research and strategies for ensuring successful vision research participation. I will also co-moderate this session (“Epidemiology of Eye Disease” section of the Programme Overview).  

Mentoring

I was the first in my immediate family to attend college, and the first in my extended family to earn a Ph.D. Mentoring trainees, especially women and people from backgrounds typically underrepresented in academia, is a privilege I greatly enjoy.

Commitment to Diversity

I am deeply committed to the representation of diverse data, ideas, and voices in research. As a CTSC KL2 scholar, I was challenged to take an interdisciplinary approach to my work, beyond focusing on genetic data alone. This has given me the opportunity to broaden my research via an interdisciplinary approach and cross-disciplinary team. The representation of people from diverse backgrounds in spaces wherein research is conducted is incredibly important to me. I have recruited team members from various training backgrounds including sociology, social work, genetics, statistics, anthropology, biochemistry, and optometry. At our team meetings, I invite everyone to share their unique perspectives and have truly appreciated and benefitted from their varied backgrounds and expertise.

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Jessica is a CTSC KL2 scholar alumna who has also received a CTSC Annual Pilot Award to form All Eyes on Us to better understand perceptions, values, and barriers to vision care in a racially and socio-demographically diverse Cleveland community.