1. 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

2. 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) 2http://code.google.com/p/idrsnapshot/Vojtech Huser

3. 3http://code.google.com/p/idrsnapshot/Vojtech Huser

4. 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 4http://code.google.com/p/idrsnapshot/Vojtech Huser

5. 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 5http://code.google.com/p/idrsnapshot/Vojtech Huser

6. 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) 6http://code.google.com/p/idrsnapshot/Vojtech Huser

7. 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 7http://code.google.com/p/idrsnapshot/Vojtech Huser

8. 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 8http://code.google.com/p/idrsnapshot/Vojtech Huser

9. How can we measure all this? Vojtech Huserhttp://code.google.com/p/idrsnapshot/9

10. 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 10http://code.google.com/p/idrsnapshot/Vojtech Huser

11. 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). 11http://code.google.com/p/idrsnapshot/Vojtech Huser

12. IDR v1: Marshfield Clinic (case study) (Event-DOB) + ‘3000-01-01’ 12http://code.google.com/p/idrsnapshot/Vojtech Huser

13. 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) 13http://code.google.com/p/idrsnapshot/Vojtech Huser

14. “Consortia made easy(ier)” 14http://code.google.com/p/idrsnapshot/Vojtech Huser

15. Case study 2 (NIH IDR) Vojtech Huserhttp://code.google.com/p/idrsnapshot/15

16. 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 16http://code.google.com/p/idrsnapshot/Vojtech Huser

17. http://code.google.com/p/idrsnapshot/17

18. 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 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 18http://code.google.com/p/idrsnapshot/Vojtech Huser