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

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

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

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

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

SEER registries

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

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

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

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

21st Century Cancer Registry Stephen.Fuchslin@cdph.ca.gov California Cancer Registry California Department of Public Health

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

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

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

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

Confidential and Proprietary Information September 17, 2018

© 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 www.cap.org/cancerprotocols Provides cancer reporting required data elements Mandated for accreditation by ACoS-CoC & CAP LAP © 2013 College of American Pathologists. All rights reserved

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

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

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

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

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 2010-2011 Webinar Series

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

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