Big Data Danielle Leach Rudy Morgan Deborah Tobin Stacie Lindsay

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Presentation transcript:

Big Data Danielle Leach Rudy Morgan Deborah Tobin Stacie Lindsay Group 2 Danielle Leach Deborah Tobin Susan Strong Rudy Morgan Stacie Lindsay Virgie Townsend Mentors: Vernal Branch Yves DeClerk, MD Sophia George

Data Types Electronic health records Administrative data Claims data Patient /Disease registries Health surveys Clinical trials data Omics data

Sources Electronic health records Seer Claims Patient reported data/registries Biological samples

Examples Kids First Project Every Child Cancer Link St Jude Cloud Genetic Data Commons All of Us Private Companies/Flatiron/Patients Like Me/Inspire/Emerging Med Count Me In Project Genie

Examples/Lessons Learned from Group Survivorship- High Needs In Retrospective and Prospective Research Data - Quality of Life and Symptom Management Prostate Example Breast cancer- good data sets Consent from IRB- Challenges on who and how tissue collection for research purposes Cholangiocarcinoma example of PRO/registry

Barriers IP Privacy-HIPAA Siloed Institutions Common Data Points Funding Pay Analysis Workforce lack of skilled workforce Politics Insurance reimbursement Liability Correlation/Validation Disparities Access Collection challenges Interoperability Reproducibility and Validation

Opportunities Incentives/Regulations- Carrots and Sticks Fellowships for Workforce Patient Data- definition and trust AACR Research Advocate Data Working Group Health Data Coalition

Core question: Why?

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