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Explore ways to evaluate and improve an Integrated Data Repository for research purposes. Learn about comparing different IDRs, measuring data comprehensiveness, and assessing data sources.
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IDR Snapshot:Quantitative Assessment Methodology Evaluating Size and Comprehensiveness of an Integrated Data Repository Vojtech Huser, MD PhD Laboratory for Informatics Development NIH Clinical Center
Research question • How can you evaluate an IDR? • What makes a good IDR ? (for research)? • IDR A(in 2007) vs. IDR A (in 2012) • IDR A vs. IDR B • Other domains: • Compare countries based on GDP • per person and (PPP) adjusted (purchasing power parity) http://code.google.com/p/idrsnapshot/
Motivation/Assumptions • Improving IDR • while acknowledging the a-priori limitations • Ideal IDR for a researcher • versus existing data • General measure on whole-IDR level • Not research project specific • Build on IDR surveys from 2007, 2008 and 2010 http://code.google.com/p/idrsnapshot/
Examples • Academic medical center • with limited number of outpatient clinics • University of Utah • Integrated delivery network • Outpatient and inpatient records • Partners Healthcare • HMO • Health Plan component • Kaiser Permanente South California http://code.google.com/p/idrsnapshot/
Target level (researcher-facing schema) • Level 1: Epic Clarity (6000+ tables) • Level 2: Clinical Data Repository (add data from GE Centricity (outpatient) (plus other sources) • Level 3: subset of CDR for health plan members only • Level 4: i2b2, or VDW, or OMOP, or XYZ (Deduce, Futher, BTRIS) http://code.google.com/p/idrsnapshot/
Beyond core data sources • Diagnoses, Procedures, Labs • Cost data • ADT data (admission, ICU) • Visit data • specialty of the encounter clinician • Clinical document types • Biopsy, Well-child visit note, Bone mineral density report • Actual text on top of the document type • PHR usage data http://code.google.com/p/idrsnapshot/
Less-common data sources • Insurance history data • Over the counter drug data • Death certificate data • Link to other sources • Pharmacy dispensing data • Out of network claims data • Health Plan data • Heath Assessment questionnaire data • Out of network pharmacy refills data http://code.google.com/p/idrsnapshot/
How can we measure all this? http://code.google.com/p/idrsnapshot/
What is a good measure? • Amount of common type of data • Many IDRs contain such data • diagnoses vs. tumor registry data • Count of unique patients • Desired feature by researchers • Complete record (e.g., claims data, pharmacy refills) • comparative effectiveness research (CER) • Expert consensus • Mixed approach http://code.google.com/p/idrsnapshot/
Measures • Glasgow comma scale of 10 vs. 5 • Apgar score of 7 vs. 5 • Good measure: • Intuitive to interpret (count of patients) • facilitates monitoring and improvement • does not place any arbitrary value on individual measure components • (e.g., value of 10 years of medication history vs. 10 years of weight/height history). http://code.google.com/p/idrsnapshot/
IDR v1: Marshfield Clinic (case study) http://code.google.com/p/idrsnapshot/ (Event-DOB) + ‘3000-01-01’
IDR case study 1 (Marshfield Clinic) • Table generation: took 2.5 hours • Size: 43 GB (includes some additional info) • Initial set of measures (G1-2, D1-4, L1-2) http://code.google.com/p/idrsnapshot/
“Consortia made easy(ier)” http://code.google.com/p/idrsnapshot/
Case study 2 (NIH IDR) http://code.google.com/p/idrsnapshot/
IDR snapshot (past and future) • Initial set of measures defined (version 1) • Applied at single institution (MC) • Use at second institution (NIH, BTRIS) • Scripts running against i2b2 schema (version 2) • Third institution potentially using it (in IRB stage) • ------- “you are here” ------- • Broader panel of experts developing (version 3) • Potentially a direct i2b2 plugin • Addition of other aspects • Direct qualitative component • Institutional component http://code.google.com/p/idrsnapshot/
Next steps • Recruit IDR experts who would like to participate on the expert panel defining the measures (ver. 3) • Recruit sites willing to use it and potentially participate on joint publication presenting the data • as institution A, B, C, D… • IRB template available • (a) data only IRB option or even (b) under IDR’s master IRB: fast-track mechanism • If interested: • email: vojtech.huser@nih.gov • Stop by AMIA joint summit poster (March 2012) IDR Snapshot: Quantitative Assessment Methodology Evaluating Size and Comprehensiveness of an Integrated Data Repository (Huser V) • Thank you for your attention http://code.google.com/p/idrsnapshot/