Establishing Effective
Patient Navigation Programs
in Oncology
PROCEEDINGS OF A WORKSHOP
Margie Patlak, Cyndi Trang, and Sharyl J. Nass, Rapporteurs
National Cancer Policy Forum
Board on Health Care Services
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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This activity was supported by Contract No. 200-2011-38807 (Task Order No. 0061) and Contract No. HHSN263201200074I (Task Order No. HHSN26300120) 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, American Society of Hematology, Association of American Cancer Institutes, Bristol-Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Helsinn Therapeutics (U.S.), Inc., LIVESTRONG Foundation, Merck, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, 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: 978-0-309-47454-2
International Standard Book Number-10: 0-309-47454-X
Digital Object Identifier: https://doi.org/10.17226/25073
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2018. Establishing effective patient navigation programs in oncology: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/25073.
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WORKSHOP PLANNING COMMITTEE1
LISA KENNEDY SHELDON (Co-Chair), Chief Clinical Officer, Oncology Nursing Society
LAWRENCE N. SHULMAN (Co-Chair), Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
LUCILE L. ADAMS-CAMPBELL, Professor of Oncology, Associate Director for Minority Health and Health Disparities Research, Georgetown University Lombardi Cancer Center
KAREN BASEN-ENGQUIST, Annie Laurie Howard Research Distinguished Professor, Professor of Behavioral Science, and Director, Center for Energy Balance in Cancer Prevention and Survivorship, The University of Texas MD Anderson Cancer Center
DARCY BURBAGE, Supportive and Palliative Care Nurse Navigator, Helen F. Graham Cancer Center & Research Institute, Christiana Care Health System
CYNTHIA CANTRIL, Director, Cancer Support Services and Patient Navigation, Sutter Pacific Medical Foundation
EFRÉN J. FLORES, Radiologist, Director, Community Health Improvement, Department of Radiology, Massachusetts General Hospital
ELIZABETH FRANKLIN, Senior Director, Policy and Advocacy, Cancer Support Community
LORI HOFFMAN HŌGG, Veterans Health Administration National Oncology Clinical Advisor and Program Manager, Prevention Policy, Department of Veterans Affairs
RONALD M. KLINE, Medical Officer, Patient Care Models Group, Center for Medicare & Medicaid Innovation, Centers for Medicare & Medicaid Services
ADITI NARAYAN, Senior Manager, Patient Support and Research, LIVESTRONG Foundation
___________________
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.
MANDI PRATT-CHAPMAN, Associate Center Director, Patient-Centered Initiatives and Health Equity, George Washington Cancer Center
ELIZABETH ROHAN, Health Scientist, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention
KIRSTEN SLOAN, Vice President, Health Policy, American Cancer Society Cancer Action Network
GEORGE J. WEINER, C.E. Block Chair of Cancer Research, Professor of Internal Medicine, and Director, Holden Comprehensive Cancer Center, The University of Iowa
WENDY A. WOODWARD, Associate Professor and Service Chief, Clinical Breast Radiation, Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center
Project Staff
ERIN BALOGH, Senior Program Officer
NATALIE LUBIN, Senior Program Assistant
KELLY SINGEL, Mirzayan Science and Technology Policy Fellow (January 2018–April 2018)
CYNDI TRANG, Research Assistant
SHARYL J. NASS, Director, National Cancer Policy Forum and Board on Health Care Services
NATIONAL CANCER POLICY FORUM1
EDWARD J. BENZ, JR. (Chair), President and Chief Executive Officer Emeritus, Dana-Farber Cancer Institute; Richard and Susan Smith Distinguished Professor of Medicine, Genetics and Pediatrics, Harvard Medical School
AMY P. ABERNETHY, Chief Medical Officer, Chief Scientific Officer, and Senior Vice President, Oncology, Flatiron Health
LUCILE L. ADAMS-CAMPBELL, Professor of Oncology, Associate Director for Minority Health and Health Disparities Research, Georgetown University Lombardi Cancer Center
GARNET L. ANDERSON, Senior Vice President and Director, Public Health Sciences Division, Fred Hutchinson Cancer Research Center; Affiliate Professor, Department of Biostatistics, University of Washington
KENNETH ANDERSON, Kraft Family Professor of Medicine, American Cancer Society Clinical Research Director, Jerome Lipper Multiple Myeloma Center, Harvard Medical School, Dana-Farber Cancer Institute
KAREN BASEN-ENGQUIST, Annie Laurie Howard Research Distinguished Professor, Professor of Behavioral Science, and Director, Center for Energy Balance in Cancer Prevention and Survivorship, The University of Texas MD Anderson Cancer Center
CATHY J. BRADLEY, Associate Director, Cancer Prevention and Control, University of Colorado Cancer Center
OTIS W. BRAWLEY, Chief Medical Officer, American Cancer Society
ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network
CHRISTOPHER R. COGLE, Professor of Medicine, Pierre Chagnon Professor of Stem Cell Biology and Bone Marrow Transplant, University of Florida; Scholar in Clinical Research, Leukemia & Lymphoma Society
___________________
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.
NANCY E. DAVIDSON, President and Executive Director, Seattle Cancer Care Alliance; Senior Vice President, Director, and Full Member, Clinical Research Division, Fred Hutchinson Cancer Research Center; Head, Department of Medicine, Division of Medical Oncology, University of Washington
GEORGE D. DEMETRI, Professor of Medicine and Director, Ludwig Center, Harvard Medical School; Senior Vice President for Experimental Therapeutics, Dana-Farber Cancer Institute; Associate Director for Clinical Sciences, Dana-Farber/Harvard Cancer Center
JAMES H. DOROSHOW, Deputy Director for Clinical and Translational Research, National Cancer Institute
NICOLE F. DOWLING, Associate Director, Division of Cancer Prevention and Control, 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, Professor, Perelman School of Medicine; Director, Center for Personalized Diagnostics and Division of Precision and Computational Diagnostics, University of Pennsylvania
STANTON L. GERSON, President, Association of American Cancer Institutes; Director, Case Comprehensive Cancer Center; Professor of Hematological Oncology, Case Western Reserve University; Director, University Hospitals Seidman Cancer Center
LORI HOFFMAN HŌGG, Veterans Health Administration National Oncology Clinical Advisor and Program Manager, Prevention Policy, Department of Veterans Affairs
LINDA HOUSE, President, Cancer Support Community
HEDVIG HRICAK, Chair, Department of Radiology, Memorial Sloan Kettering Cancer Center
LISA KENNEDY SHELDON, Chief Clinical Officer, Oncology Nursing Society
SAMIR N. KHLEIF, Director, Loop Immuno-Oncology Lab, Biomedical Scholar, and Professor of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center
RONALD M. KLINE, Medical Officer, Patient Care Models Group, Center for Medicare & Medicaid Innovation, Centers for Medicare & Medicaid Services
LEE M. KRUG, Disease Area Head, Lung and Head & Neck Cancer, Immuno-Oncology, Bristol-Myers Squibb
MICHELLE M. LE BEAU, Arthur and Marian Edelstein Professor of Medicine and Director, The University of Chicago Comprehensive Cancer Center
MIA LEVY, Director, Cancer Health Informatics and Strategy; Ingram Associate Professor of Cancer Research; Associate Professor of Biomedical Informatics and Medicine, Vanderbilt-Ingram Cancer Center
MARTIN J. MURPHY, Chief Executive Officer, CEO Roundtable on Cancer
RICHARD PAZDUR, Director, Oncology Center of Excellence; Acting Director, Office of Hematology and Oncology Products, Food and Drug Administration
MACE L. ROTHENBERG, Chief Development Officer, Oncology, Pfizer Global Product Development, Pfizer Inc.
RICHARD L. SCHILSKY, Senior Vice President and Chief Medical Officer, American Society of Clinical Oncology
DEBORAH SCHRAG, Chief, Division of Population Sciences, Professor of Medicine, Department of Medical Oncology, Harvard Medical School, Dana-Farber Cancer Institute
LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
DAN THEODORESCU, Paul A. Bunn, Jr. Endowed Chair in Cancer Research, Professor of Surgery and Pharmacology, and Director, University of Colorado Cancer Center
VERENA VOELTER, Head, United States Oncology Clinical Development & Medical Affairs, Novartis Pharmaceuticals Corporation
GEORGE J. WEINER, C.E. Block Chair of Cancer Research, Professor of Internal Medicine, and Director, Holden Comprehensive Cancer Center, The University of Iowa
ROBERT A. WINN, Associate Vice Chancellor, Community Based-Practice; Professor of Medicine, Division of Pulmonary and Critical Care Medicine, University of Illinois at Chicago; Director, University of Illinois Health Cancer Center
National Cancer Policy Forum Staff
ERIN BALOGH, Senior Program Officer
PATRICK BURKE, Financial Officer
NATALIE LUBIN, Senior Program Assistant
KELLY SINGEL, Mirzayan Science and Technology Policy Fellow (January 2018–April 2018)
CYNDI TRANG, Research Assistant
SHARYL J. NASS, Director, National Cancer Policy Forum and 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:
ETHAN BASCH, University of North Carolina at Chapel Hill
LINDA HORN, Patient Advocate and Cancer Survivor
RAYMOND OSAROGIAGBON, Baptist Cancer Center
ANGIE PATTERSON, Georgia Center for Oncology Research and Education
MELISSA SIMON, Northwestern University Feinberg School of Medicine
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 PATRICK DELEON, Uniformed
Services University of the Health Sciences. 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.
Acknowledgments
Support from the many 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, American Society of Hematology, Association of American Cancer Institutes, Bristol-Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Helsinn Therapeutics (U.S.), Inc., LIVESTRONG Foundation, Merck, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Pfizer Inc.
The forum wishes to express its gratitude to the expert speakers whose presentations helped further the dialogue and advance progress in improving patient navigation for patients with cancer. 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
Addressing the Impact of Poverty on Cancer Care
Overcoming Health Care System Barriers
Building Trust and Providing Emotional Support
NAVIGATION THROUGHOUT THE CANCER CARE CONTINUUM
EXAMPLES OF NAVIGATION SUCCESS STORIES
WHO SHOULD RECEIVE NAVIGATION SERVICES?
EVIDENCE ON PATIENT NAVIGATION
REAL-WORLD MODELS OF PATIENT NAVIGATION
Christiana Care Health System Navigation Program
Women’s Wellness Connection Navigation Program
American Cancer Society Patient Navigation Program
Wayfinder Patient Navigation Program
DuPage Patient Navigation Collaborative
Dana-Farber Cancer Institute Patient Navigation Pilot
Massachusetts General Hospital Patient Navigation Programs
Apoyo con Cariño Palliative Care Program
Sutter Health Pilot Navigation Program
Blue Distinction® Centers for Cancer Care
Geisinger Oncology Navigator Program
Making Services Convenient for Patients
Tailoring Services to Fit Community and Individual Needs
Building in Program Metrics and Evaluation
Communicating with Team Members
Coordinating and Supervising Services
PATIENT NAVIGATION COMPETENCIES AND STANDARDS
Commission on Cancer Standards
National Oncology Patient Navigation Competencies
PATIENT NAVIGATION TRAINING AND CERTIFICATION
EXAMPLES OF POLICY CHALLENGES AND OPPORTUNITIES
Increasing Affordability of Patient Navigation
Making Patient Navigation a Nationwide Priority
National Navigation Resource Clearinghouse
RECENT POLICY INITIATIVES IN PATIENT NAVIGATION
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Boxes, Figures, and Table
BOXES
3 Translating Research into Practice
FIGURES
1 Structural elements of the ecology of breast cancer disparities and strategies to address them
2 A cancer diagnosis and treatment pathway
3 Patient navigation across the cancer care continuum
4 Conceptual model for a clinical outreach program
5 Patient Care Connect Program (PCCP) care map
6 Lancaster General Health risk-based care model
TABLE
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Acronyms and Abbreviations
ACA |
Patient Protection and Affordable Care Act |
ACS |
American Cancer Society |
AONN+ |
Academy of Oncology Nurse & Patient Navigators |
CMS |
Centers for Medicare & Medicaid Services |
CoC |
Commission on Cancer |
CORE |
Center for Oncology Research and Education |
CPNG |
Cancer Patient Navigators of Georgia |
DPNC |
DuPage Patient Navigation Collaborative |
EHR |
electronic health record |
GATE |
Generation and Translation of Evidence |
HIV |
human immunodeficiency virus |
HRSA |
Health Resources and Services Administration |
MGH |
Massachusetts General Hospital |
NCI |
National Cancer Institute |
NNRT |
National Navigation Roundtable |
OCM |
Oncology Care Model |
ONS |
Oncology Nursing Society |
PACE |
presenting information, asking questions, checking for understanding, and expressing concerns |
PCCP |
Patient Care Connect Program |
PN-BOT |
Patient Navigation Barriers and Outcomes Tool |
PNRP |
Patient Navigation Research Program |
PSA |
prostate-specific antigen |
REDCap |
Research Electronic Data Capture |
TEAM |
Together-Equitable-Accessible-Meaningful |
TRIP |
Translating Research Into Practice |
WWC |
Women’s Wellness Connection |