Innovation in Electronic
Health Records for
Oncology Care, Research,
and Surveillance
_____
Erin Balogh, Francis Amankwah,
Theresa Wizemann, and Sharyl Nass,
Rapporteurs
National Cancer Policy Forum
Board on Health Care Services
Health and Medicine Division
Computer Science and
Telecommunications Board
Division on Engineering and Physical
Sciences
Proceedings of a Workshop
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by Contract No. 75D30121D11240 (Task Order No. 75D30121F00002) and Contract No. HHSN263201800029I (Task Order No. HHSN26300008) 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 Community Cancer Centers, Bristol Myers Squibb, Cancer Support Community, Flatiron Health, Merck & Co., Inc., National Comprehensive Cancer Network, National Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Partners in Health, Pfizer Inc., Sanofi, and Society for Immunotherapy of Cancer. 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: 978-0-309-69387-5
International Standard Book Number-10: 0-309-69387-X
Digital Object Identifier: https://doi.org/10.17226/26720
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2023. Innovation in electronic health records for oncology care, research, and surveillance: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26720.
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PLANNING COMMITTEE1
MIA LEVY (Co-Chair), Chief Medical Officer, Foundation Medicine, Inc.
LAWRENCE N. SHULMAN (Co-Chair), Professor of Medicine, Deputy Director for Clinical Services, and Director of the Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network
NICOLE F. DOWLING, Associate Director for Science, Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention
MIMI HUIZINGA, Senior Vice President and Head of Medical Affairs, ImmunoGen, Inc.
BRADLEY MALIN, Accenture Professor of Biomedical Informatics, Biostatistics, and Computer Science and Vice Chair for Research Affairs, Department of Biomedical Informatics, Vanderbilt University Medical Center
ALEXANDER MELAMED, Assistant Professor, Department of Obstetrics and Gynecology, Columbia University Medical Center, New York Presbyterian Hospital
NEAL MEROPOL, Vice President, Research Oncology, Flatiron Health; and Adjunct Professor, Case Comprehensive Cancer Center
ETTA D. PISANO, Senior Director for Research Development, Center for Research and Innovation, American College of Radiology; and Vice Chair for Research, Department of Radiology, Beth Israel Deaconess Medical Center
JULIE SCHNEIDER, Associate Director, Research Strategy and Partnership, Oncology Center of Excellence, Food and Drug Administration
ROBERT A. WINN, Director, Massey Cancer Center, Senior Associate Dean for Cancer Innovation, Professor of Pulmonary Disease and Critical Care Medicine, and Lipman Chair in Oncology, School of Medicine, Virginia Commonwealth University; and President-Elect, Association of American Cancer Institutes
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
ROBIN YABROFF, Scientific Vice President, Health Services Research, American Cancer Society
Project Staff
FRANCIS AMANKWAH, Program Officer
RACHEL AUSTIN, Senior Program Assistant (until June 2022)
LORI BENJAMIN BRENIG, Research Associate
ANNALEE GONZALES, Administrative Assistant (until May 2022)
ARZOO TAYYEB, Finance Business Partner
ERIN BALOGH, Co-Director, National Cancer Policy Forum
SHARYL J. NASS, Co-Director, National Cancer Policy Forum; and Senior Director, Board on Health Care Services
NATIONAL CANCER POLICY FORUM1
EDWARD J. BENZ, JR. (Chair), President and Chief Executive Officer, Emeritus, Dana-Farber Cancer Institute; and Richard and Susan Smith Distinguished Professor of Medicine, Genetics, and Pediatrics, Harvard Medical School
PETER C. ADAMSON, Global Head, Oncology Development and Pediatric Innovation, Sanofi
GARNET L. ANDERSON, Senior Vice President and Director, Public Health Sciences Division, Fred Hutchinson Cancer Center; Affiliate Professor, Department of Biostatistics, University of Washington; and Principal Investigator, Women’s Health Initiative Clinical Coordinating Center
KAREN BASEN-ENGQUIST, Annie Laurie Howard Research Distinguished Professor, Director of the Center for Energy Balance in Cancer Prevention and Survivorship, and Professor of Behavioral Science, The University of Texas MD Anderson Cancer Center
SMITA BHATIA, Director, Institute for Cancer Outcomes and Survivorship, Gay and Bew White Endowed Chair in Pediatric Oncology, and Professor and Vice Chair of Outcomes for Pediatrics, School of Medicine, The University of Alabama at Birmingham
CHRIS BOSHOFF, Chief Development Officer, Oncology and Rare Disease, Global Product Development, Pfizer Inc.
CATHY J. BRADLEY, David F. and Margaret Turley Grohne Endowed Chair for Cancer Prevention and Control Research, Professor and Associate Dean for Research, Colorado School of Public Health, and Bunn Chair of Cancer Research and Deputy Director, University of Colorado Cancer Center
OTIS W. BRAWLEY, Bloomberg Distinguished Professor, Department of Epidemiology and Oncology, Bloomberg School of Public Health and Department of Oncology, School of Medicine, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University
ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network
___________________
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.
CHRISTINA CHAPMAN, Assistant Professor of Radiation Oncology, Baylor College of Medicine
GWEN DARIEN, Executive Vice President, Patient Advocacy and Engagement, National Patient Advocate Foundation
NANCY E. DAVIDSON, Executive Vice President for Clinical Affairs, Senior Vice President and Professor, Clinical Research Division, and Raisbeck Endowed Chair for Collaborative Cancer Research, Fred Hutchinson Cancer Center; Professor and Head, Division of Medical Oncology, Department of Medicine, University of Washington
JAMES H. DOROSHOW, Director, Division of Cancer Treatment and Diagnosis, Deputy Director for Clinical and Translational Research, and Head of the Oxidative Signaling and Molecular Therapeutics Group, National Cancer Institute of the National Institutes of Health
NICOLE F. DOWLING, Associate Director for Science, Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention
SCOT W. EBBINGHAUS, Vice President and Therapeutic Area Head, Oncology Clinical Research, Merck Research Laboratories
KOJO S. J. ELENITOBA-JOHNSON, Inaugural Chair of the Department of Pathology and Laboratory Medicine, Memorial Sloan Kettering Cancer Center
STANTON L. GERSON, Dean and Senior Vice President, Medical Affairs, Case Western Reserve University School of Medicine; Acting Director, Case Comprehensive Cancer Center; Asa & Patricia Shiverick–Jane B. Shiverick (Tripp) Professor of Hematological Oncology and Distinguished University Professor and Director, National Center for Regenerative Medicine, Case Western Reserve University
JULIE R. GRALOW, Chief Medical Officer and Executive Vice Present, American Society of Clinical Oncology
ROY S. HERBST, Ensign Professor of Medicine, Professor of Pharmacology, Chief of Medical Oncology, and Associate Director for Translational Research, Yale Cancer Center and Yale School of Medicine
HEDVIG HRICAK, Carroll and Milton Petrie Chair, Department of Radiology, Memorial Sloan Kettering Cancer Center; Professor of Radiology, Weill Medical College, Cornell University; and Professor, Gerstner Sloan-Kettering Graduate School of Biomedical Sciences
CHANITA HUGHES-HALBERT, Vice Chair for Research, Professor in the Department of Preventive Medicine, and Associate Director for Cancer Equity, Norris Comprehensive Cancer Center, Keck School of Medicine, University of Southern California
ROY A. JENSEN, Vice Chancellor and Director, The University of Kansas Cancer Center, William R. Jewell, M.D. Distinguished Kansas Masonic Professor of Cancer Research, Director, Kansas Masonic Cancer Research Institute, and Professor of Pathology and Laboratory Medicine, Cancer Biology, Anatomy and Cell Biology, University of Kansas Medical Center, and Past President, Association of American Cancer Institutes
RANDY A. JONES, Professor and Associate Dean for Partner Development and Engagement, University of Virginia School of Nursing; and Assistant Director, Community Outreach and Engagement, Emily Couric Clinical Cancer Center, University of Virginia
BETH Y. KARLAN, Nancy Marks Endowed Chair in Women’s Health Research, Vice Chair and Professor, Department of Obstetrics and Gynecology, Director, Cancer Population Genetics, Jonsson Comprehensive Cancer Center, University of California, Los Angeles
SAMIR N. KHLEIF, Director, Jeannie and Tony Loop Immuno-Oncology Lab; Biomedical Scholar and Professor of Oncology, Georgetown Lombardi Comprehensive Cancer Center, Georgetown University Medical Center; and Member, Society for Immunotherapy of Cancer
MIA LEVY, Chief Medical Officer, Foundation Medicine, Inc.
SCOTT M. LIPPMAN, Director, Moores Cancer Center and Distinguished Professor of Medicine, Senior Associate Dean, Associate Vice Chancellor for Cancer Research and Care, and Chugai Pharmaceutical Chair in Cancer, University of California, San Diego
LARISSA NEKHLYUDOV, Professor of Medicine, Harvard Medical School; Internist, Brigham and Women’s Hospital; and Clinical Director, Internal Medicine for Cancer Survivors, Dana-Farber Cancer Institute
RANDALL A. OYER, Clinical Professor of Medicine, Perelman School of Medicine; Executive Medical Director, Ann B. Barshinger Cancer Institute, Penn Medicine Lancaster General Health; and Past President, Association of Community Cancer Centers
CLEO A. RYALS, Head of Health Equity and Health Disparities Research, Flatiron Health
RICHARD L. SCHILSKY, Principal Investigator, ASCO TAPUR Study; and Professor Emeritus, University of Chicago
JULIE SCHNEIDER, Associate Director, Research Strategy and Partnership, Oncology Center of Excellence, Food and Drug Administration
SUSAN M. SCHNEIDER, Associate Professor Emerita, School of Nursing, Duke University
LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
HEIDI SMITH, Vice President, Center of Operations and Research Excellence, U.S. Clinical Development and Medical Affairs, Oncology, Novartis Pharmaceuticals
LARA STRAWBRIDGE, Director, Division of Ambulatory Payment Models, Patient Care Models Group, Center for Medicare and Medicaid Innovation, Centers for Medicare & Medicaid Services
GEORGE J. WEINER, Director of the Holden Comprehensive Cancer Center at The University of Iowa, C. E. Block Chair of Cancer Research, and Professor of Internal Medicine and Pharmaceutical Science, University of Iowa
ROBERT A. WINN, Director, Massey Cancer Center, Senior Associate Dean for Cancer Innovation, Professor of Pulmonary Disease and Critical Care Medicine, and Lipman Chair in Oncology, School of Medicine, Virginia Commonwealth University; and President-Elect, Association of American Cancer Institutes
ROBIN YABROFF, Scientific Vice President, Health Services Research, American Cancer Society
National Cancer Policy Forum Staff
FRANCIS AMANKWAH, Program Officer
LORI BENJAMIN BRENIG, Research Associate
TORRIE BROWN, Program Coordinator (from August 2022)
CHIDINMA CHUKWURAH, Senior Program Assistant (from August 2022)
JACARI JENNINGS, Senior Program Assistant (from July 2022)
ARZOO TAYYEB, Finance Business Partner
ERIN BALOGH, Co-Director, National Cancer Policy Forum
SHARYL J. NASS, Co-Director, National Cancer Policy Forum; and 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 report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.
We thank the following individuals for their review of this report:
ETHAN M. BASCH, University of North Carolina
TUFIA C. HADDAD, Mayo Clinic
MATTHEW B. WEINGER, Vanderbilt University Medical Center
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by DANIEL R. MASYS, University of Washington. He was responsible for making certain that an independent examination of this report was carried out in accordance with the 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
Support from the many annual sponsors of the National Academies of Sciences, Engineering, and Medicine’s National Cancer Policy Forum is crucial to the work of the forum. Federal sponsors include the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health. Non-federal 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 Community Cancer Centers, Bristol Myers Squibb, Cancer Support Community, Flatiron Health, Merck & Co., Inc., National Comprehensive Cancer Network, National Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Partners in Health, Pfizer Inc., Sanofi, and Society for Immunotherapy of Cancer.
The forum wishes to express its gratitude to the expert speakers whose presentations and discussions helped inform efforts to improve the development and use of electronic health records for oncology care, research, and surveillance. 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
OVERVIEW OF THE USE OF EHRs IN ONCOLOGY CARE, RESEARCH, AND SURVEILLANCE
The EHR in Clinical Oncology Practice
The EHR and the Patient’s Relationship with Health Care Providers
The EHR in Quality Improvement and Research
IMPROVING THE PATIENT-FACING ASPECTS OF EHRs
The EHR as a Tool for Patient–Clinician Communication
Integrating Patient-Reported Outcomes into Oncology EHR Systems
Sharing of Patient Data within and among EHR Systems
Using the EHR to Nudge Evidence-Based Cancer Care
OPTIMIZING THE FUNCTIONALITY AND USABILITY OF EHRs IN ONCOLOGY CARE
Applying a Human-Centered Design Approach to Improving EHR Systems
IMPROVING EHR DATA COLLECTION TO SUPPORT CLINICAL CARE, QUALITY AND VALUE, AND RESEARCH
Improving Data Collection and Display to Support Clinical Decision Making
Opportunities to Improve the Usability of EHRs for Research Purposes
Opportunities to Improve EHR Data Collection to Support High-Quality Care and Value
Suggestions to Improve Data Collection and Promote Data Sharing
FEDERAL AGENCIES AS PARTNERS IN DRIVING EHR INNOVATION
OSTP: The Role of Science and Technology Policy in Advancing EHRs
The NCI: Using EHR Data for Cancer Surveillance
The CDC: Leveraging EHRs for Public Health Planning and Research
The FDA: Using EHR Data to Generate Evidence for Oncology Product Development
ONC: Advancing Interoperability and Innovation in Health IT
CMS: Enabling EHRs to Better Support Health Care Data Exchange
Addressing the Challenges of Integrating SDOH Data in the EHR
Coordinating EHR-Related Efforts across Federal Agencies and with Partners
Boxes, Figures, and Table
BOXES
FIGURES
2 EHRs in prospective clinical research
3 Integrating patient self-reporting of symptoms into the EHR workflow
4 Spectrum of nudge interventions for clinicians and patients
5 Human-centered approach to EHR design
6 Systems Engineering Initiative for Patient Safety (SEIPS) 3.0 model of patient care
7 Flow of data to the CDC National Program of Cancer Registries
TABLE
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Acronyms and Abbreviations
| AI | artificial intelligence |
| AMIA | American Medical Informatics Association |
| AIMS | APHL’s Informatics Messaging Services |
| APHL | Association of Public Health Laboratories |
| API | application programming interface |
| APM | alternative payment models |
| ASCO | American Society of Clinical Oncology |
| CDC | Centers for Disease Control and Prevention |
| CEHRT | certified EHR technology |
| CMMI | Center for Medicare and Medicaid Innovation |
| CMS | Centers for Medicare & Medicaid Services |
| CPT | current procedural terminology |
| CRISS | Center for Research and Innovation in System Safety |
| CTAC | Clinical and Translational Research Advisory Committee |
| EHR | electronic health record |
| ePRO | electronic patient-reported outcome |
| FDA | U.S. Food and Drug Administration |
| FHIR | Fast Healthcare Interoperability Resources |
| HIE | health information exchange |
| HIPAA | Health Insurance Portability and Accountability Act of 1996 |
| HITECH | Health Information Technology for Economic and Clinical Health Act |
| HL7 | Health Level 7 |
| ICD | International Classification of Disease |
| KP | Kaiser Permanente |
| mCODE | minimal Common Oncology Data Elements |
| MIPS | Merit-Based Incentive Payment System |
| ML | machine learning |
| NCI | National Cancer Institute |
| NIH | National Institutes of Health |
| NLP | natural language processing |
| OHDSI | Observational Health Data Sciences and Informatics |
| ONC | Office of the National Coordinator for Health Information Technology |
| OSTP | Office of Science and Technology Policy |
| PRO | patient-reported outcome |
| QI | quality improvement |
| SDOH | social determinants of health |
| SEER | Surveillance, Epidemiology, and End Results |
| SEIPS | Systems Engineering Initiative for Patient Safety |
| SIC | serious illness conversation |
| USCDI | United States Core Data for Interoperability |
