Zoom – https://zoom.us/j/99883044336

Taming the Many Barriers to Data Use and Reuse

Melissa Haendel, PhD

Associate Professor, Medical Informatics &

Clinical Epidemiology

Oregon Health Sciences University

Abstract:  Addressing complex challenges in disease discovery and diagnosis is benefited by leveraging data of many types and sources. Although we learn different things from these data sources, building a coherent holistic view of the data landscape to solve any given biomedical problem is nontrivial. Often in the aggregation process, many of the original connections within the data are lost. Moreover, it is difficult to make new (inferred) connections without a common conceptual model. Common models are made possible by novel data integration technologies and innovative data capture strategies that leverage ontologies. Regulatory issues and data licensing issues can prevent data reuse and/or redistribution. Strategies for reconciling different terminologies, data models, and governance structures in support of integrative, community-driven open biomedical science will be presented, using The National COVID Cohort Collaborative and the Monarch Initiative as examples.

Bio:  Melissa Haendel is the Director of the Center for Data to Health (CD2H) at Oregon Health & Science University, and the Director of Translational Data Science at Oregon State University. Her background is in both wet and dry lab translational science, with a focus over the past decade on the development of ontologies, semantic engineering technologies, and open science infrastructure programs. Dr. Haendel’s vision is to weave together healthcare systems, basic science research, and patient generated data through development of data integration technologies and innovative data capture strategies. Dr. Haendel co-leads the Monarch Initiative, an international consortium dedicated to utilizing model organism genotype-phenotype data, deep phenotyping, and graph-based integration techniques to improve rare disease diagnosis. She also co-leads the NCATS Data Translator, which aims to integrate hundreds of data resources for mechanism and drug discovery. The CD2H is tasked with coordinating informatics across 59 Clinical and Translational Science Award Institutes, and is focused on implementation of cloud and information architecture, clinical data model interoperability, and precision-medicine focused terminology development. Dr. Haendel is the co-lead for the GA4GH Clinical and Phenotypic workstream, where she supports cross-disciplinary international teams, development of standards for clinical genetics in rare disease and cancer, and improving access to data across the world.

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