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Addressing health inequities in which one large source of inequity relates to the non-inclusion and underrepresentation of diverse ethnic groups and communities in biomedical research has contributed to broad disparities in US healthcare. Experts contend it is a missed scientific opportunity to understand the complex factors leading to poor health and disease. For example, non-European descended (Caucasian) Americans make up more than one-third of the US population, but account for 6% of all participants in federally funded clinical trials (National Library of Medicine). Similarly, fewer than 5% of federally funded lung disease studies in the last 20 years have focused on these groups, though African Americans are one-third more likely than other populations to have asthma and over three times more likely to die from it.

The rapid expansion of technologies and their uses provides many opportunities for addressing disparities and improving health equity. Digital technologies can narrow the equity gap in many ways, from Butterfly Network’s $2,000 handheld ultrasound device that can create digital imaging solutions for rural areas, to telemedicine’s capability to address unmet needs and gaps between provider knowledge and disease diagnosis and treatment practices. Critically, digital solutions can help build trust in healthcare practices by engaging patients, providers, and companies in new, community-based digital channels and health policy ecosystems.

Our distinguished panel of experts will help us identify where to begin in setting the stage for improving health equity through digitalization. Dr. Scott Kahn, Chief Information and Privacy Officer at LunaPBC, brings long years of experience in the medical sciences and digital technology domains. Scott will provide an experienced view of inequity and gaps in the representation of diverse ethnic groups and communities in federally funded genomic and disease research, what effects these gaps create, and action steps that can improve equity. Dr. Timothy Mackey, Professor and Director of the Global Health and Data Policy Institute at UC San Diego, is a recognized expert in global health policy research. Tim is a recent grant recipient from the Robert Wood Johnson Foundation for work into a privacy-preserving, trusted data ecosystem for indigenous peoples and also conducts work on health equity and clinical trial research and technology development. He will give us an overview of his project and thoughts on how project results will inform equity considerations. Our third panel speaker is Dr. Pieter De Leenheer, Chief Technology Officer at the Boston-based scale-up, 1upHealth. Pieter brings years of experience in the data management and data governance policy domains, and will speak to 1upHealth’s vision for a cloud-native infrastructure enabling FHIR-based health data interoperability and compute across the healthcare ecosystem, that enables providers/ACOs, digital health companies, and pharma to operate better across risk, quality, care and experience. The goal of FHIR is to create a standard defining how healthcare information can be exchanged between different computer systems regardless of how it is stored in those systems.

Our final speaker will be Dr. Ilya Zaslavsky, Director of the Spatial Information Systems Laboratory at the San Diego Supercomputer Center, UC San Diego. Ilya is a recognized expert in the field of distributed information management systems, in particular in spatial and temporal data integration, geographic information systems, and spatial data analysis. Ilya, who was recently named SDSC’s 2022 Principal Investigator Person of the Year, will provide insights into some of the technical infrastructure challenges of the analysis and modeling of health disparities and vulnerable populations. The panel will be moderated by Dr. James Short, Lead Scientist and Director of the Center for Large-Scale Data Systems research (CLDS) at the San Diego Supercomputer Center, UC San Diego.

Speaker

Dr. James Short

Lead Scientist, San Diego Supercomputer Center at UC San Diego

Dr. Scott Kahn

Chief Information and Privacy Officer, LunaPBC

Dr. Timothy Mackey

Professor and Director, Global Health and Data Policy Institute at UC San Diego

Dr. Pieter De Leenheer

Chief Technology Officer, 1upHealth

 

DR. ILYA ZASLAVSKY

Director, Spatial Information Systems Laboratory at the San Diego Supercomputer Center, UC San Diego