McColley Heads Collaborative Synergy Paper on Studying Health Inequities Across the Lifespan Highlighted by COVID-19
The virus that causes COVID-19 may not know who it infects, but that doesn’t mean it doesn’t discriminate. According to the Centers for Disease Control and Prevention, various sub-populations in America remain at increased risk of contracting the virus, being hospitalized by the infection, and dying from the disease.
Susanna McColley, MD, scientific director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute and professor of Pediatrics in the Division of Pulmonary and Sleep Medicine, sought to explore the factors behind these health inequities and issues in lack of inclusion of representative populations when she applied for a Center for Leading Innovation and Collaboration (CLIC) Synergy Paper grant.
Synergy Papers are collaborative manuscripts developed by three or more Clinical and Translational Science Awards (CTSA) Program hubs with the purpose of addressing substantial challenges in clinical or translational research through new, innovative writing teams. The Northwestern University Clinical and Translational Sciences (NUCATS) Institute is funded in part by a CTSA grant from the National Institutes of Health.
McColley, the associate director for Child Health at NUCATS, is developing the Synergy Paper with a group of collaborators from CTSA hubs across the country. The proposal stemmed from findings at the NUCATS-hosted Un-Meeting on Lifespan and Life Course Research in March 2020, also supported by a grant from CLIC.
This paper could be very important as the National Institute of Health and other funding agencies look into further vaccine development, studying new treatments, and studying long-term and even intergenerational effects of infection.”
The Un-Meeting included a series of brief presentations on key themes, after which attendees guided breakout group formation to generate innovative ideas to enhance translational science. Groups focused on barriers to inclusion of representative populations in research that recruits individuals and research that uses existing data. When the COVID-19 pandemic began affecting the United States just weeks later — putting deep-rooted health disparities in the spotlight — McColley modified her Synergy Paper proposal to demonstrate how longstanding inequities and the lack of representative inclusion in research were highlighted by the pandemic.
McColley proposed to explore underrepresented populations, including children and older adults, people from racial or ethnic minority groups, people with disabilities, people of low socioeconomic status, and people who are sexual and gender minorities. The research team hopes to improve representation in medical research by applying principles of structural competency to the design and implementation of studies. The goal is to develop insight that will be applicable to future research, including studies of COVID-19 and its long-term consequences.
Structural competency requires knowledge of social determinants of health, including economic stability, neighborhood and built environment, health and healthcare, social and community context, and education. All are associated with health and life expectancy and can be approached through improving structures in healthcare and research. Structural competency drives changes in healthcare structures and practices that are barriers to medical care and engagement. Examples include having appropriate language interpretation and education materials for people who do not speak or read English and providing safe, timely transportation services for people who may have difficulty getting to appointments. The Synergy Paper will propose specific strategies for reimagining research structures to advance human health equitably.
The resulting manuscript that McColley plans to submit to the Journal of Clinical and Translational Science is based on a comprehensive literature review led by Q. Eileen Wafford, MSt, MLIS, a research librarian at the Galter Health Sciences Library and Learning Center.
As much as McColley has learned about health inequity and disparities in research representation, she has also been rewarded by the opportunity to connect and learn from professionals outside of her field, from clinicians who focus on pregnancy to epidemiologists who study older adults. Her work with early career investigators has also proved fruitful: “Their contributions have been amazing. I encourage scientists to look outside their disciplines and to always work with young people as much as possible. I've made great friends and learned so much that I often feel that I'm in school again.”
The Synergy Paper has been designed to improve the health of underrepresented individuals, but McColley hopes its impact will extend to NIH policy as well.
“This paper could be very important as the National Institute of Health and other funding agencies look into further vaccine development, studying new treatments, and studying long-term and even intergenerational effects of infection. This Synergy Paper has brought researchers both closer together and closer to our goal of rectifying healthcare disparities,” says McColley. “As the work continues, so will the learning process.”
Written by Morgan Frost
