Michelle Fong (NH-ME LEND): Mind the Gap! Data Equity is Key to Health Equity for People with Disabilities

Equitable health data represents all populations and can be linked to their common characteristics. When researchers from the Center for Community Inclusion and Disability Studies, Maine’s University Center for Excellence in Developmental Disabilities (UCEDD), sought to examine the health equity of Maine’s population with intellectual and neurodevelopmental disabilities regarding COVID-19, they encountered a data gap. Maine’s COVID-19 data could be disaggregated by gender, race, ethnicity, and age, but not by disability status or type. It is an example of inequity in data collection, or a data gap, that prevents analysis of pandemic health outcomes for Mainers with disabilities. Further, it is a barrier to equitable planning for the next public health emergency. Data gaps perpetuate the invisibility of people with disabilities to policymakers, enabling biased decision-making that leads to unnecessary and sometimes unethical health barriers for them.

As part of her leadership placement and in partial fulfillment of her master’s degree in public health at the University of New England, NH-ME LEND trainee Michelle Fong (2023) examined the drivers of data gaps for people with disabilities to make recommendations for improving their health equity by ensuring their representation in public health data. As a result of her research, Fong authored a white paper and produced and presented a policy brief on the topic to Maine’s congressional delegation in early April 2023. Her leadership mentors were UCEDD Director Dr. Alan Cobo-Lewis and UCEDD Associate Director, Susan Russsell. Links to the full-text documents appear below:

Michelle FongAbout Michelle Fong: Michelle holds a bachelor’s degree in biology from the University of San Diego and is a 2023 graduate of the NH-ME LEND program. Her early career spanned almost two decades in the biosciences. She then became self-employed as a medical writer and transitioned into philanthropic and nonprofit endeavors. She is currently completing her MPH with a focus on health policy and partnering with several organizations, including the Midcoast Public Health Council, to improve social determinants of health in Knox County. Michelle aspires to combine her education and lived experience to contribute to improving the lives of people with neurodevelopmental and mental health disabilities.

Photo credits:
Featured image by Greg Plom (pixabay.com)
Headshot of Michelle Fong courtesy of Michelle Fong