1. Cancer Registries Peter Paul Yu M.D. FACP, FASCO Physician-in-Chief
Hartford HealthCare Cancer Institute

2. Cancer Registries Collect health data in a timely, consistent format
Allow analytics
Cancer Control
Quality of Care
Health economics
Transparency
Healthcare providers
Public
Confidential and Proprietary Information
September 17, 2018

3. More specifically Trends in cancer incidence Stage at diagnosis
Treatment and Survival
Provider data
Inform prevention and cancer control
Epidemiology based research
Confidential and Proprietary Information
September 17, 2018

4. Registries in a world of Digital Health, Value-Based Medicine and Precision Medicine
Real time case ascertainment
Less time with data acquisition
More time with data analytics
Hospital and Provider Outcomes reporting
Cancer Biomarkers
Interoperability of data
Confidential and Proprietary Information
September 17, 2018

5. Dual National Registry Systems
NCI-SEER
Research mission
28% of US population
SEER-Medicare database
CDC State Cancer Registries
Population Health
Semi-autonomous
Aggregated de-identified data to CDC
Confidential and Proprietary Information
September 17, 2018

6. SEER registries

7. Where are we now? More sophisticated registry software applications
Permitting linkage with
Death certificate data
Some registries link with LexisNexis for follow up
Census
DMV data
Hospital Discharge files
Medicare Parts A, B, D
Integration of electronic pathology reports for
Case finding/ Follow up
Histopathologic characterization of the tumors
Moving to automated capture of tissue-based biomarker results

8. to support studies in near real time including clinical trials
Where are we now?
Rapid Case Ascertainment
to support studies in near real time including clinical trials
Use of e-path reports
Used by Kentucky in a lung cancer intervention trial
Routinely performed in Seattle (all cases abstracted within one month)
Residual Tissue Repository
3 SEER registries- demonstration project
Scaled SEER-linked Virtual Biorepository being piloted
Piloting systems for capturing data from electronic medical records
Testing ability of data acquisition through HIEs

9. California Cancer Registry, evaluated stage at diagnosis, survival, and quality of care for 698,025 Californians with breast, colon, rectal, lung and prostate cancer from 2004 through 2012.
Payer source
Medicare
Medi-Cal
Medicare-Medi-Cal dual eligibles
Private
DOD VA
Uninsured

10. Stage at Diagnosis - Colon 5-Year Relative Survival - Colon

14. 21st Century Cancer Registry
California Cancer Registry
California Department of Public Health

15. What: Move from 19th to late 20th to early 21st Century
“Real-time” cancer reporting 
Start a cancer case with the first documented diagnosis  (i.e. path report).
Bi-Directional and Interoperable
Move away from uni-directional data flowing into CCR
Real-time interoperability with a data consortium
Expand data collection across the cancer care continuum and experience
Move beyond “counting” cancer cases

16. Cancer Surveillance: Where are we today?
1 out of every 4 deaths in US is due to cancer
California Cancer Registry
Two-million reports received yearly
Only HALF are cancer-related
Reports
Narrative vs. Synoptic
Multiple ways to receive - Fax, mail, PHIN
Manual data extraction process
Need for a system to:
Produce better data = Standardization
Better analyze data = Structured Data
© 2013 College of American Pathologists. All rights reserved

17. Possibi Possibilitieslities
Real-Time Data Across the Cancer Care Continuum
Diagnostic Community
Treatment Community
General Business Data
Self-Reporting Patient Experience
Home Care/Hospice Services
Pathology
Imaging
Laboratory
Bio-markers
Genomics
Pertinent-Negatives
Oncology
Radiation
Surgery
Hormonal
Clinical Trials
Responses to Treatment
Billing/Claim
Demographic
Family History
Blogs
Connection to Cancer Community
Self-Reporting for Research
Care- Coordination
Quality of Life
Pain-Measurement

18. Cancer Care Continuum
Standardized, Structured, Aggregated and Real-Time Data Across the Cancer Care Continuum
Individual & Community-Based Risk Assessment
Diagnostic Community
Treatment Community
General Business Data
Self-Reporting Patient Experience
Home Care/Hospice Services
Bio-markers
Genomics
Cancer Risk Pre-disposition
Occupational History
Community and Geographical
Pathology
Imaging
Laboratory
Pertinent-Negatives
Oncology
Radiation
Surgery
Hormonal
Clinical Trials
Responses to Treatment
Billing/Claim
Demographic
Family History
Blogs
Connection to Cancer Community
Self-Reporting for Research
Care- Coordination
Quality of Life
Pain-Measurement

20. Confidential and Proprietary Information
September 17, 2018

21. © 2013 College of American Pathologists. All rights reserved
CAP Cancer Protocols
The 65 CAP Cancer Protocols consist of 81 cancer case summaries (checklists)
Utilized in pathology reporting
Explanatory Notes
Provides cancer reporting required data elements
Mandated for accreditation by ACoS-CoC & CAP LAP
© 2013 College of American Pathologists. All rights reserved

22. CAP electronic Cancer Checklists (eCC)
Based on CCPs
XML format (computer-readable)
Why eCC?
Standardized approach
Electronically records and reports structured, discrete cancer data elements
Integrates into existing software
Supports interoperability
Ease of use for queries, QC and immediate feedback
Cancer surveillance and research activities
© 2013 College of American Pathologists. All rights reserved

23. Narrative vs. “Synoptic-Like” Reports
Narrative vs. Synoptic Report
Narrative vs. “Synoptic-Like” Reports
Narrative Report = Visual “data scraping” for extraction of required data elements
Synoptic Report = Presented as discrete data fields within a single line of text
© 2013 College of American Pathologists. All rights reserved

24. eCC Key Benefits
Completeness and standardization of cancer pathology reports
Reduced dictation, transcription and manual abstraction costs
Structured data allows for improved, immediate analytics at site and central registry level
Automated process reduces manual errors in abstraction and transmission
Patient data direct to registry
Improved patient care (CCO)
© 2013 College of American Pathologists. All rights reserved

25. CCR-CAP Pilot February – July 2013 2 institutions (PAMF & ECH)
2 vendors (Cerner & mTuitive)
Deidentified, structured data for 65 reports
Transmission from lab direct to CCR
100% successful transmission/ reception
Instantaneous data parsing/ mapping at CCR
© 2013 College of American Pathologists. All rights reserved

26. Cancer Pathology Reporting in Ontario
Interoperability and EHR
8/4/2011
Cancer Pathology Reporting in Ontario
Some facts and figures:
About 400 pathologists submit cancer pathology reports to CCO from 100 cancer treating hospitals
97% of cancer pathology reports are electronically sent by Ontario labs and hospitals
Over 100,000 electronic cancer pathology reports are received each year at CCO
© 2013 College of American Pathologists. All rights reserved
NAACCR Webinar Series

27. CCO: eCC Use Improves Quality of Patient Care
Data collected and analyzed by CCO has improved patient care
Prostatic Resection Positive Margins
Reduced number of resections with positive margins by giving direct feedback to surgeons with high positive margin rate
Colorectal Lymph Node Retrieval
Increased retrieval rate
Published in Journal of Oncology Practice, July 2013, Srigley et al
© 2013 College of American Pathologists. All rights reserved

28. What could you all do with?
Near Real–Time Cancer Data
Bi-Directional and Interoperable Capabilities
Patient-Centric Data Model
All source documents linked to a patient
Structured
Standardized
Aggregated
Decision Support Systems
AB 2325 Signed September 14, 2016