getting clinical data for research: columbia’s clinical data warehouse
DESCRIPTION
Getting Clinical Data for Research: Columbia’s Clinical Data Warehouse. Adam Wilcox, PhD Associate Professor of Biomedical Informatics. Secondary Data Analysis of Electronic Clinical Data. Benefits Unobtrusive Fast & inexpensive Easy. Challenges Availability Quality Security. Questions. - PowerPoint PPT PresentationTRANSCRIPT
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Getting Clinical Data for Research:
Columbia’s Clinical Data Warehouse
Adam Wilcox, PhDAssociate Professor of Biomedical Informatics
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Secondary Data Analysis of Electronic Clinical Data
Benefits
Unobtrusive Fast & inexpensive Easy
Challenges
Availability Quality Security
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What data are available?
How good are the data?
How do I get data?
What’s the worst that can happen?
Questions
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What’s the worst that can happen?
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Names MRNs Addresses Telephone and fax #s SSNs Email addresses Dates Certificate numbers Employers
names/addresses
HIPAA PHI Geographic subdivisions
smaller than state, except initial 3 digits of zip code
Account #s URLs IP addresses Biometric identifiers Full face photographs Any other characteristics
that may be used individually or in combination to identify the individual
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Notification of Breach◦ If more than 500 patients, HHS also notified◦ Media
Civil penalties◦ Up to $250,000◦ Repeat violations up to $1.5M
HITECH Penalties
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100 110 120 130 140 150 160 170 1806065707580859095
100
What’s the worst that can happen?
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1994: Created, sponsored by Columbia University Department of Medical Informatics and Office of Clinical Trials◦ Populated with data from existing clinical data repository◦ Supporting clinical research
1998: Columbia + Cornell = NewYork Presbyterian Hospital◦ Warehouse funded by NYPH◦ Goal to incorporate and provide data across whole system
2004: Formal analysis of CDW user needs by Clinical Quality and Information Technology Committee (CQIT)◦ Creation of Data Warehousing Subgroup◦ Need to bring together disparate clinical data sources◦ Need to manage user requests for data
CUMC/NYP Clinical Data Warehouse History
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Patient demographics Visit history Diagnoses Procedures Vital signs Medications Flowsheet elements, structured notes (Notes)
What data are available?
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Patients and Visits
1985
1987
1989
1991
1993
1995
1997
1999
2001
2003
2005
2007
2009
2011
0
200000
400000
600000
800000
1000000
1200000
1400000
PatientsVisits
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1 7 13 19 25 31 37 43 49 55 61 67 73 79 85 91 970
5000
10000
15000
20000
25000
30000
35000
Patient Ages (visits in last year)
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AsianBlack/Non-HispanicDeclinedWhite HispanicAmerican IndianOtherPacific IslanderUnknownWhite/Non-HispanicBlack Hispanic
Race/Ethnicity
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Female
Male
Sex
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Ambula-tory
Surgery
Clinic DPO visit ED Inpatient Therapy0.00E+005.00E+051.00E+061.50E+062.00E+062.50E+063.00E+063.50E+064.00E+064.50E+06
Visit Types (last 5 years)
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Data type CountDiagnoses 3.3MProcedures 570KLab tests
Medications 1.5MVital signs ~80% of patients
Flowsheet/structured elements 400MNotes 6.3M
Other Data (in last year)
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I have a WebCIS login
Submit HIPAA D preparatory to research forms
Receive HIPAA approval
Fill out DISCOVERY form to request data
Contact Adam Wilcox
1: Gain access to data(to be updated in coming weeks)
Y
N
2: Explore data using tools &
select variables
Top 50 Variables List &
Meaningful Use variables
De-identified databases:
RedEx I2B2*
3: Request & refine data from Clinical Data Warehouse (CDW)
4: Data management &
analysis
Receive data set
Import & manage data for analysis
using: SAS Stata REDCap AMALGA Other
What level of identifying patient information are you requesting?
Loop back to DISCOVERY for
approval to publish data and findings
Other**
Pin down key variables to submit
via DISCOVERY
De-identified Limited*** Identifiable
Covered by HIPAA G§ Fill out HIPAA B
Receive HIPAA approval
Submit IRB & receive approval
Work with programmer to refine dataShare results with
CER Studio regarding findings &
DISCOVERY process
How do I get data?
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DISCOVERY
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WICER Community Survey
Household Surveys
Com-munity
Out-reach Center
Ambulatory Clinics
Existing Studies 8,000+ surveys
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WICER Research Data Warehouse
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Research Data Explorer (RedX)
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I2b2 Workbench
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WICER CER Studio Identify priority disparity
areas for CER Integrate statistical
expertise via preliminary studies
Validation analyses on cost and service utilization
Identify high-risk physical & mental comorbidities
Integration of data Collection and storage of
patient-reported data Identify individuals based
upon eligibility criteria EHR plug-in Informatics tools to
support data retrieval Intervention delivery De-identify and link
datasets
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What data are available?
How good are the data?
How do I get data?
What’s the worst that can happen?
Questions