Rebooting Cancer Data Through Structured Data Capture GEMMA LEE NAACCR CONFERENCE JUNE, 2017
Acknowledgement Richard Moldwin, MD, PhD, CAP Sandy Jones, CDC Wendy Blumenthal, CDC David Kwan, Cancer Care Ontario
Background Through NAACCR, the cancer registry community has historically harmonized data collection The movement toward standardized electronic health records (EHRs) is opening the door for more standardization The cancer registry community requires technical specifications and tools 3
Introduction to SDC A single XML schema to support any type of form content to support any type of SDT data transmission A mapping system that permits, but does not require, any type of DE or coding system (Coding systems and DEs are not required for interoperable data transmission, aggregation or querying) A mapping to DEs is recommended for cross-form conformance to national standards, and to manage code maintenance in a central location. 4
SDC uses simple Q and A set (QAS structure) that links to data elements (DE) Form Design Template (ID-T1) Header Section (ID-SH1) Section (ID-S29) QAS:DE (ID-Q92) QAS:DE (ID-Q11) QAS (ID-Q5) Section (ID-S23) QAS:DE (ID-Q39) QAS (ID-Q30) Footer Section (ID-SF78)
Structured Data Capture - Conceptual Workflow SDC will identify, evaluate and harmonize four new standards that will enable EHRs to capture and store structured data: 1. Standard for the structure or design of the form or template (container) 2. Standard for how EHRs interact with the form or template 3. Standard to auto-populate form or template 4. Standard for the structure of the CDEs that will be used to fill the specified forms or templates Standards will facilitate the collection of data so that any researcher, clinical trial sponsor, reporting and/or oversight entity can access and interpret the data in electronic format Will leverage existing standards such as XML and IHE Retrieve Form for Data Capture (RFD) 6
Current Synoptic Reporting Status 7
Current State of Synoptic Reporting Synoptic Reporting is not a new concept Pockets of clinical specialties have began adopting synoptic reporting: Diagnostic Imaging, Radiation, Surgery, Pathology and Survivorship Jurisdictionally pockets have adopted synoptic reporting: USA, Alberta, Manitoba Surgery Currently taking place in Nova Scotia, Alberta and Ottawa Pathology Documenting synoptically for over a decade in Ontario Genetic testing is new challenge for pathology synoptic reporting California Cancer Registry begun 2015 Radiology Currently piloting lung cancer screening reporting in Ontario 8
Pathology Reporting Status in Ontario Proportion of Ontario hospitals reporting cancer pathology to CCO, by level of standardization, from narrative to synoptic format Reporting Level Level 1 Level 2 Level 3 Level 4 Level 5 Level 6 Description Narrative No CAP content Single text field data Narrative CAP content Single text field data Level 2 + Synoptic-like structured format Level 3 + Electronic reporting tools using drop-down menus Level 4 + Level 5 + Standardized Common data and reporting language messaging Data elements standards with stored in discrete ckeys, SNOMED CT data fields or other encoding % Ontario Hospitals 2004-05 5% 40% 50% 5% 0% 0% % Ontario Hospitals 2006-07 0% 5% 70% 25% 0% 0% % Ontario Hospitals 2008-09 0% 0% 65% 17% 18% 0% % Ontario Hospitals 2009-10 0% 0% 20% 2% 78% 0% % Ontario Hospitals January 2012 0% 0% 8% 0% 0% 92% % Ontario Hospitals May 2012 0% 0% 3% 0% 0% 97% % Ontario Hospitals October 2015 0% 0% 0% 0% 0% 100% Data Source: CCO epath, as of October 2015 Ontario hospitals includes 119 acute care facilities primary and secondary. Primary sites submit cancer pathology reports directly to CCO Ontario Cancer Registry via CCO epath system. Primary sites may also report cancer pathology for secondary hospitals. Private labs and Paediatric facilities are not included 9
Biomaker Reporting Status in Ontario Site # Testing Sites Reporting Synoptically # Testing Sites Funded by CCO % Testing Sites Reporting Synoptically Breast 13 18 72% Stomach 5 6 83% Lung 6 7 86% Melanoma 6 7 86% Colorectal 7 8 88% 79% Breast 86% Stomach Her2 91% Lung 89% Melanoma 85% Colorectal 10
Synoptic Radiology Reporting in Ontario Progress update: Incorporate IHE SDC profile into the IHE MRRT profile as the named option for advanced radiology reporting templating Socialize results of CT Lung Cancer Staging Landscape Assessment Pilot LDCT Lung Cancer Screening Reporting template within the Lung Cancer Screening Pilot for People at High Risk Develop next generation IHE SDC Profile near completion of Phase 2; about to begin with Phase 3 Work towards using structured discrete clinical data elements to achieve automation of actionable findings LDCT Lung Cancer Screening pilot 11
Demonstration of IHE Structured Data Capture Past Testing and Demonstrations: Integrating the Healthcare Enterprise (IHE) Connectathon of North America in 2017 HIMSS Interoperability Showcase demonstration at the HIMSS 2015-2017 Annual Conferences Public Health Informatics Conference 2016 in Atlanta, GA Demonstration participants: Form Manager: JBS International/CAP Form Filler: Epic/JBS/CCO Form Receiver: CDC/California Cancer Registry Form Designer: College of American Pathologists (CAP)/CCO/CDC Use Case: Report CAP cancer pathology and biomarker checklist data from laboratories to cancer registry systems 12
Cancer Data Workflow Provider Environment Request a Form (CCDA) 2 3 Form Manager and Form Repository CAP Cancer Protocols 1 Form Designer Receive the Partially filled Form College of American Pathologist (CAP) Patient Doctor EHR/Laboratory System Submit Completed Form Cancer Registry 4 State Cancer Registry 13
NPCR Accomplishments with Synoptic Reporting Implemented reporting of College of American Pathologists (CAP) Electronic Cancer Checklist (ecc) data in NAACCR Volume V standard (HL7 2.5.1) from PathGroup Laboratory to state cancer registries Developed prototype of emarc plus to receive the CAP eccs in SDC XML format Tested and demonstrated use of IHE Structured Data Capture (SDC) Profile to report CAP ecc pathology and biomarker data to emarc Plus IHE Connectathon in 2014, 2015, 2016, and 2017 Healthcare Information Management and Systems Society (HIMSS) Interoperability Showcase in 2014, 2015, 2016, and 2017 Public Health Informatics Conference 2016 Participating in template development on IHE Radiology Domain and working with Cancer Care Ontario 14
emarc Plus Prototype for SDC reporting 15
CCO s Goal and Scope of Business Case for the Synoptic Reporting Goal Provide the Ministry of Health and Long-Term Care with a business case outlining the current state and ideal future state of synoptic reporting throughout the cancer care continuum. In Scope In addition to an general overview of synoptic reporting, we will be including: Clinical Standards Data (Content) Standards Transmission Standards Clinical Interoperability Data Standards Information Storage Change Management 16
CCO s Recommendations for Synoptic Reporting Structured Data Capture (SDC) Format Champion usage for all synoptic reporting moving forward Use industry standard information technologies Supported by majority system vendors Maximize Data Collection and Use collect once and use many times 17
Integrated Synoptic Reporting Cancer Continuum Primary Care Primary Care F/U Transition Clinical Real-time Decision-making (EMR) Primary Care E-referral Pathology/ Genetics Imaging Surgery Med Onc., Rad Onc., Systemic Treatment Integrated Synoptic Report Data Reporting and Performance Management E-referral Patient Reported Outcomes Lab Medicine Big Data Research Patient 18
Discussion Questions CAP release of SDC xml format for all templates in late 2017 19
20 Thank you! Please contact Gemma Lee for more information Gemma.Lee@cancercare.on.ca