1. NAACCR 2009 Annual Conference A Patient Centered Event- Oriented Data Model for Cancer Surveillance and Research Jack K. Golabek Vice-President, Engineering

2. In this presentation we describe a patient-event oriented approach to collecting, storing and working with population-based cancer data. We discuss some of the features and benefits of this model as well as the challenges it presents. Slide 2NAACCR Conference 2009 Copyright © 2009 AIM Inc.

3. We gratefully acknowledge the contributions of The Pediatric Oncology Group of Ontario (POGO) for providing invaluable expertise and feedback on the implementation and performance of patient-event cancer data collection and storage. POGO tracks and reports on all cases of childhood cancer in the province of Ontario, Canada (pop. ~12 million). Slide 3NAACCR Conference 2009 Copyright © 2009 AIM Inc. For more information, please visit: www.pogo.ca

4. Patient centered A patient can have 1 or more tumors Each tumor described by an abstract Typical organization of data in a Cancer Registry Database Slide 4NAACCR Conference 2009 Copyright © 2009 AIM Inc. Patients Tumors Abstracts Each abstract employs a standard core data set and vocabulary (e.g. NAACCR 11), sometimes with localized extensions.

5. The patient undergoes a series of chronological events and outcomes Slide 5NAACCR Conference 2009 Copyright © 2009 AIM Inc. Each event is described by its own set of information  Tumor Histology (checklist)  Biomarker information  Family history & risk factors  Other desired information DxTxFUPRe 2007 | 2008 | 2009 | 2010 | 2011 Tx Diagnosis Event Summary  Surgery  Systemic Therapy  Radiotherapy  Toxicity Treatment Event Summary Timeline

6. Patient centered A patient can have 1 or more events An event summary is composed of 1 or more standard data forms A different way of organizing cancer data Slide 6NAACCR Conference 2009 Copyright © 2009 AIM Inc. Patients Events Event Summary  Form 1  Form 2  Etc. Composed of Event Forms

7. Preserves the context of clinical data Captures temporal relationships between data Aligns with the process of patient care Cancer abstracts can be derived as a rollup of the event data Slide 7NAACCR Conference 2009 Copyright © 2009 AIM Inc.

8. Extensible & flexible – More event types and annotation forms can be added at any time – Can start small and grow Simplifies building an EHR from an EMR – Events and forms can be mapped to EMR documents/triggers – Can use HL7 CDA to capture event data automatically from EMR systems – This could facilitate building a cancer record automatically Simplifies workflow management – “To do” lists consist of missing events and/or forms on patient cases – Follow-up events can be scheduled explicitly Simplifies temporal analysis – Allows comparison of patient timelines by various cross-cut criteria – Can exposes possible correlations between events and outcomes Slide 8NAACCR Conference 2009 Copyright © 2009 AIM Inc.

9. A different way of looking at cancer data June 2009 Slide 9NAACCR Conference 2009 Copyright © 2009 AIM Inc.

10. Slide 10NAACCR Conference 2009 Copyright © 2009 AIM Inc. P1: F-12y P2: M-1y P3: M-3y P4: M-3y P5: M-4y P6: M-6y P7: M-7y P8: M-16y Timeline Visualization: Mortality in Acute Leukemia, NOS (for instructional/demonstration purposes only) Event Legend: DX = Diagnosis RV = Revised Diagnosis TX = Treatment Start RE = Relapse FUP = Follow-up DE = Death

11. Defining events: – What are the events of interest? – When does an event start? When does it end? – How should events be annotated? Handling more detailed data: – How can data be efficiently collected? – How can data be reviewed for quality? Slide 11NAACCR Conference 2009 Copyright © 2009 AIM Inc.

12. The patient event model: – Context and chronology – Allows rich annotation – Aligns with medical practice – Flexible & extensible – Simplifies temporal analyses Benefits may outweigh challenges in adoption June 2009Slide 12 NAACCR Conference 2009 Copyright © 2009 AIM Inc.

13. Jack Golabek Vice-President, Engineering Artificial Intelligence in Medicine Inc. 2 Berkeley Street, Suite 403 Toronto, Ontario M5A 2W3 jgolabek@aim.on.ca Slide 13NAACCR Conference 2009 Copyright © 2009 AIM Inc.