1. 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

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

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

5. 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

6. 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

7. 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

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

9. Core question: Why?