1. From Innovation to Commercialization Access to Data
May 9, 2019
Douglas Bell, MD
Leader, Informatics Program, Associate Director, UCLA CTSI
Professor in Residence, UCLA Department of Medicine
▪ bringing CTSI innovations to the greatest health needs in Los Angeles 1

2. How Can I Access EHR Data?
Amazing Uses
Electronic Health Record
Data
Contact the CTSI Informatics Program:

3. The “Honest Broker” Process for Research
Recruitment Outreach
Electronic Health Record
BedMaster
Data Files
Contains
74 M Diagnoses
287 M Lab results
82 M Procedures
65 M Medications
57 M Vital Signs
…and much more on
2.4 M Patients*
MyChart
Retrospective Analysis
(with Office of Health Informatics & Analytics and CTSI Biostatistics Program)
-specific data
-specific patients
Another 1.8M pts don’t have any structured data
Machine Learning
(with Office of Health Informatics & Analytics and CTSI Biostatistics Program)
REDCap
OnCore
Gene Chip (2 M SNPs) – IPH Sample

4. Tools for Self-Service Data Access
DDR - Discovery Data Repository
Date-shifted version of Epic Caboodle
Sites:
What You Can Search On:
Cedars-Sinai
City of Hope
UCLA
University of Southern California
forthcoming:
Children’s Hospital Los Angeles
Community clinics affiliated with Charles R. Drew University
Demographics
ICD-9, ICD-10 and CPT Codes
Laboratory Tests
Medications
Visit Details
Vital Signs
Vital Status
Contact the CTSI Informatics Program:

5. Tools for Self-Service Data Access
Participation by 48 CTSAs
Connected to ACT:
University of California, San Francisco
Boston University
Univ of Cincinnati/Cincinnati Children’s
Children’s National
Univ of Colo/Children’s Hosp. Colorado
Columbia University
University of Florida
Duke University
University of Kansas
Emory Univ./Morehouse Univ.
University of Kentucky
Harvard University
University of Minnesota
Indiana University
University of North Carolina at Chapel Hill
Johns Hopkins University
Mayo Clinic
University of Pittsburgh
Medical College of Wisconsin
University of Southern California
Medical University of South Carolina
UT Health San Antonio
New York University
UT Southwestern
Northwestern University
Vanderbilt University Medical Center
Ohio State University
Virginia Commonwealth Univ.
Oregon Health & Science University
Washington University in St. Louis
Pennsylvania State University
Weill Cornell Medicine
Stanford University
University of Alabama at Birmingham
U. of Arkansas for Medical Sciences
University of California, Davis
University of California, Irvine
University of California, Los Angeles
University of California, San Diego
Over 440,000 queriable data elements
Over 124 million unique patients currently available to query across the network
Staging for ACT:
University of New Mexico
Case Western University
University of Rochester
Dartmouth College
UT Houston
Scripps Research / Scripps Health
University of Texas Medical Branch
Tufts University
University at Buffalo
University of Utah
University of Illinois-Chicago
University of Virginia
University of Massachusetts
University of Washington
University of Miami
University of Wisconsin-Madison
University of Michigan
Wake Forest University

6. Consulting Services
See:
See:
Contact the CTSI Informatics Program:

7. Programs
May 16, AM
Nearly 300 investigators attended training webinars in 2018
Learn how to:
Search 6.5M+ de-identified patient records
Expand a study from single to multi-site
Obtain patient counts from all institutions w/ one query
Inform NIH Inclusion Enrollment Reports w/ patient counts by gender, race and ethnicity
Increase cohort identification for rare disease studies
Obtain coordinated data provisioning support