Proceedings of a Workshop
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This activity was supported by Contract No. 75D30121D11240 (Task Order No. 75D30123F00024) and Contract No. HHSN263201800029I (Task Order No. 75N98023F00019) with the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health, respectively, and by the American Association for Cancer Research, American Cancer Society, American College of Radiology, American Society of Clinical Oncology, Association of American Cancer Institutes, Association of Cancer Care Centers, Cancer Center at Illinois, Flatiron Health, Merck, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, Partners In Health, Patient Advocate Foundation, and Pfizer Inc. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-73222-2
International Standard Book Number-10: 0-309-73222-0
Digital Object Identifier: https://doi.org/10.17226/28676
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2025. Enabling 21st-century applications for cancer surveillance through enhanced registries and beyond: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/28676.
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WORKSHOP PLANNING COMMITTEE1
LISA C. RICHARDSON (Co-Chair), Centers for Disease Control and Prevention
ROBIN YABROFF (Co-Chair), American Cancer Society
CATHY BRADLEY, Colorado School of Public Health
SCARLETT LIN GOMEZ, University of California, San Francisco
NADIA HOWLADER, National Cancer Institute
LARISSA NEKHLYUDOV, Brigham and Women’s Hospital; Dana-Farber Cancer Institute; Harvard Medical School
BRYAN PALIS, American College of Surgeons
SUSAN M. SCHNEIDER, Duke University
LAWRENCE L. SHULMAN, University of Pennsylvania
ROBERT A. WINN, Virginia Commonwealth University
Project Staff
ANNA ADLER, Senior Program Assistant
TORRIE BROWN, Program Coordinator
EMMA WICKLAND, Research Associate
JULIE WILTSHIRE, Senior Finance Business Partner
JENNIFER ZHU, Associate Program Officer
ERIN BALOGH, Co-Director, National Cancer Policy Forum (until June 2024)
LAURENE GRAIG, Senior Program Officer (June–July 2024)
FRANCIS AMANKWAH, Co-Director, National Cancer Policy Forum (from July 2024)
SHARYL NASS, Co-Director, National Cancer Policy Forum; Senior Director, Board on Health Care Services
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1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
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NATIONAL CANCER POLICY FORUM1
ROBERT A. WINN (Chair), Virginia Commonwealth University
ROHIT BHARGAVA, Cancer Center at Illinois
SMITA BHATIA, The University of Alabama at Birmingham
GIDEON BLUMENTHAL, Merck
CHRIS BOSHOFF, Pfizer Inc.
CHRISTINA CHAPMAN, Baylor College of Medicine; Michael E. DeBakey VA Medical Center
GWEN DARIEN, Patient Advocate Foundation
CRYSTAL DENLINGER, National Comprehensive Cancer Network
JAMES H. DOROSHOW, National Cancer Insitute
S. GAIL ECKHARDT, Baylor College of Medicine
CHRISTOPHER R. FRIESE, University of Michigan
SCARLETT LIN GOMEZ, University of California, San Francisco
JULIE R. GRALOW, American Society of Clinical Oncology
SARAH GREENE, Independent Consultant; Patient Advocate
ROY S. HERBST, Yale University; American Association for Cancer Research
HEDVIG HRICAK, Memorial Sloan Kettering Cancer Center
CHANITA HUGHES-HALBERT, University of Southern California
ROY A. JENSEN, University of Kansas; Association of American Cancer Institutes
RANDY A. JONES, University of Virginia
BETH Y. KARLAN, University of California, Los Angeles
NANCY KEATING, Harvard Medical School
SAMIR N. KHLEIF, Georgetown University; Society for Immunotherapy of Cancer
RONALD M. KLINE, Centers for Medicare & Medicaid Services
SHIVAANI KUMMAR, Oregon Health & Science University
ELENA MARTÍNEZ, University of California, San Diego
LARISSA NEKHLYUDOV, Brigham and Women’s Hospital; Dana-Farber Cancer Institute; Harvard Medical School
CLEO A. RYALS, Flatiron Health
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
JULIE SCHNEIDER, Oncology Center of Excellence, U.S. Food and Drug Administration
SUSAN M. SCHNEIDER, Duke University
LAWRENCE N. SHULMAN, University of Pennsylvania
HEIDI SMITH, Novartis Pharmaceuticals
AMYE J. TEVAARWERK, Mayo Clinic
KATRINA TRIVERS, Centers for Disease Control and Prevention
ROBIN YABROFF, American Cancer Society
Forum Staff
ANNA ADLER, Senior Program Assistant (until November 2024)
TORRIE BROWN, Program Coordinator
MAKEDA HAUGHTON, Senior Program Assistant (from December 2024)
EMMA WICKLAND, Research Associate
JULIE WILTSHIRE, Senior Finance Business Partner
JENNIFER ZHU, Associate Program Officer
FRANCIS AMANKWAH, Co-Director, National Cancer Policy Forum
SHARYL NASS, Co-Director, National Cancer Policy Forum; Senior Director, Board on Health Care Services
Reviewers
This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this proceedings:
MARY CHARLTON, University of Iowa
JENNIFER LUND, University of North Carolina at Chapel Hill
NADINE WALKER, National Cancer Registrars Association
JEREMY WARNER, Brown University
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by DANIEL MASYS, University of Washington. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.
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Acknowledgments
The National Cancer Policy Forum is grateful for the support of our many annual sponsors. Federal sponsors include the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health. Nonfederal sponsors include the American Association for Cancer Research, American Cancer Society, American College of Radiology, American Society of Clinical Oncology, Association of American Cancer Institutes, Association of Cancer Care Centers, Cancer Center at Illinois, Flatiron Health, Merck, National Comprehensive Cancer Network, Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Partners In Health, and Pfizer Inc.
The forum wishes to express its gratitude to the expert speakers whose presentations and discussions helped inform opportunities to enhance and modernize cancer surveillance in order to improve cancer research, care, and outcomes for all patients. The forum also wishes to thank the members of the planning committee for their work in developing an excellent workshop agenda.
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Contents
PERSPECTIVES ON THE CURRENT STATE OF CANCER SURVEILLANCE
Opportunities and Challenges for Improving Cancer Surveillance and Registries
LESSONS LEARNED FROM U.S. AND INTERNATIONAL CANCER SURVEILLANCE EFFORTS
DATA COLLECTION METHODOLOGIES AND TECHNOLOGICAL ADVANCES IN CANCER SURVEILLANCE
Curating Real-World Electronic Health Record Data with the Flatiron Health Database
The National Cancer Database Rapid Cancer Reporting System for Real-Time Reporting
Reconceptualizing Electronic Health Record Data Entry: The Penn Smart Form Documentation Tool
Lessons From the COVID-19 and Cancer Consortium
The Centers for Disease Control and Prevention Electronic Pathology Implementation Project
CodeX Minimal Common Oncology Data Elements
The OneFlorida+ Clinical Data Trust Model for Facilitating Research
Core Clinical Data Elements for Interoperable EHRs in Cancer Surveillance
Emerging Directions in Multimodal Health Data Analytics
Making the Business Case for Investment in Data Collection Infrastructure
THE INFRASTRUCTURE AND WORKFORCE SUPPORTING CANCER SURVEILLANCE
The Cancer Surveillance Workforce
POLICY OPPORTUNITIES FOR ADVANCING PROGRESS IN CANCER SURVEILLANCE
Improving Reporting of Childhood Cancer Data
Improving Return on Investment for Cancer Registries
Resource Needs for High-Quality Cancer Surveillance
The Need for Data to Assess the Quality Impact of Payment Models
Advancing Data Linkages to Biospecimens to Enable Population-Based Studies
Aligning Incentives to Improve Data Capture
Policy Opportunities from Technological Innovations
Policy Opportunities to Improve Sharing of Patient Data
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Acronyms and Abbreviations
| ADT | admit, discharge, and transfer |
| AI | artificial intelligence |
| AIMS | APHL Informatics Messaging Services |
| AJCC | American Joint Committee on Cancer |
| APHL | Association of Public Health Laboratories |
| API | application programming interface |
| ASCO | American Society of Clinical Oncology |
| CAP | College of American Pathologists |
| CCDE | Core Clinical Data Elements |
| CDC | Centers for Disease Control and Prevention |
| CMS | Centers for Medicare & Medicaid Services |
| CoC | Commission on Cancer |
| CPAC | Canadian Partnership Against Cancer |
| CSS | Cancer Surveillance System |
| DKFZ | German Cancer Research Center or Deutsches Krebsforschungszentrum |
| DOE | Department of Energy |
| EHR | electronic health record |
| eMaRC | Electronic Mapping, Reporting, and Coding |
| FDA | U.S. Food and Drug Administration |
| FHIR | Fast Healthcare Interoperability Resources |
| GBACR | Greater Bay Area Cancer Registry |
| GDS | genomic data sharing |
| GPT | generative pre-trained transformer |
| HCSRN | Health Care Systems Research Network |
| HHS | U.S. Department of Health and Human Services |
| HIE | health information exchange |
| HIPAA | Health Insurance Portability and Accountability Act |
| HL7 | Health Level Seven International |
| HPV | human papillomavirus |
| ICD | International Classification of Diseases |
| IRB | institutional review board |
| IT | information technology |
| KPWHRI | Kaiser Permanente Washington Health Research Institute |
| mCODE | minimal Common Oncology Data Elements |
| MOSSAIC | Modeling Outcomes using Surveillance Data and Scalable Artificial Intelligence for Cancer |
| MRI | magnetic resonance imaging |
| MSK | Memorial Sloan Kettering Cancer Center |
| NAACCR | North American Association of Central Cancer Registries |
| NCCR | National Childhood Cancer Registry |
| NCDB | National Cancer Database |
| NCI | National Cancer Institute |
| NCRA | National Cancer Registrars Association |
| NIH | National Institutes of Health |
| NOAH | National Oncology rapid Ascertainment Hub |
| NPCR | National Program of Cancer Registries |
| OCM | Oncology Care Model |
| ODS | Oncology Data Specialist |
| OMOP | Observational Medical Outcomes Partnership |
| ONC | Office of the National Coordinator for Health IT |
| PCR | Pennsylvania Cancer Registry |
| PCORnet | National Patient-Centered Clinical Research Network |
| RCRS | Rapid Cancer Reporting System |
| SEER | Surveillance, Epidemiology, and End Results Program |
| TEFCA | Trusted Exchange Framework and Common Agreement |
| UCSF | University of California, San Francisco |
| USCDI | U.S. Core Data for Interoperability |
| VHA | Veterans Health Administration |
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