1. Adam Wilcox, PhD Associate Professor of Biomedical Informatics

2. Benefits  Unobtrusive  Fast & inexpensive  Easy Challenges  Availability  Quality  Security

3.  What data are available?  How good are the data?  How do I get data?  What’s the worst that can happen?

5.  Names  MRNs  Addresses  Telephone and fax #s  SSNs  Email addresses  Dates  Certificate numbers  Employers names/addresses  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

6.  Notification of Breach ◦ If more than 500 patients, HHS also notified ◦ Media  Civil penalties ◦ Up to $250,000 ◦ Repeat violations up to $1.5M

8.  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

11.  Patient demographics  Visit history  Diagnoses  Procedures  Vital signs  Medications  Flowsheet elements, structured notes  (Notes)

17. Data typeCount Diagnoses3.3M Procedures570K Lab tests Medications1.5M Vital signs~80% of patients Flowsheet/structured elements400M Notes6.3M

18. 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) 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-identifiedLimited***Identifiable Covered by HIPAA G § Fill out HIPAA B Receive HIPAA approval Submit IRB & receive approval Work with programmer to refine data Share results with CER Studio regarding findings & DISCOVERY process

21. 8,000+ surveys

25.  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

26.  What data are available?  How good are the data?  How do I get data?  What’s the worst that can happen?