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Suggested Citation:"Front Matter." 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: 10.17226/25073.
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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 PREPUBLICATION COPY—Uncorrected Proofs

THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 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 Founda- tion, Merck, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Pfizer Inc. Any opinions, findings, conclusions, or recommenda- tions 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:  International Standard Book Number-10:  Digital Object Identifier:  https://doi.org/10.17226/25073 Additional copies of this publication are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2018 by the National Academy of Sciences. All rights reserved. Printed in the United States of America 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. PREPUBLICATION COPY—Uncorrected Proofs

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental in- stitution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to re- search. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engi- neering to advising the nation. Members are elected by their peers for ex- traordinary contributions to engineering. Dr. C. D. Mote, Jr., is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sci- ences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Scienc- es, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engi- neering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY—Uncorrected Proofs

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the partici- pants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Acad- emies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY—Uncorrected Proofs

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 rap- porteurs and the institution. v PREPUBLICATION COPY—Uncorrected Proofs

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 vi PREPUBLICATION COPY—Uncorrected Proofs

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 round- tables do not issue, review, or approve individual documents. The responsibility for the pub- lished Proceedings of a Workshop rests with the workshop rapporteurs and the institution. vii PREPUBLICATION COPY—Uncorrected Proofs

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 AWNY FARAJALLAH, Vice President, Head of U.S. Medical Oncology, Bristol-Myers Squibb 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, The Loop Immuno-Oncology Lab, Biomedical Scholar, and Professor of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center viii PREPUBLICATION COPY—Uncorrected Proofs

RONALD M. KLINE, Medical Officer, Patient Care Models Group, Center for Medicare & Medicaid Innovation, Centers for Medicare & Medicaid Services 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 ix PREPUBLICATION COPY—Uncorrected Proofs

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 x PREPUBLICATION COPY—Uncorrected Proofs

Reviewers This Proceedings of a Workshop was reviewed in draft form by indi- viduals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical com- ments 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 com- ments 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 xi PREPUBLICATION COPY—Uncorrected Proofs

xii REVIEWERS Services University. He was responsible for making certain that an indepen- dent 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. PREPUBLICATION COPY—Uncorrected Proofs

Acknowledgments Support from the many sponsors of the National Academies of Sci- ences, 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 Insti- tutes 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, Can- cer 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 improv- ing 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. xiii PREPUBLICATION COPY—Uncorrected Proofs

Contents ACRONYMS AND ABBREVIATIONS xxi INTRODUCTION 1 HISTORY OF PATIENT NAVIGATION 6 WHY PATIENT NAVIGATION? 9 Addressing the Impact of Poverty on Cancer Care, 10 Communication and Education, 11 Overcoming Health Care System Barriers, 14 Building Trust and Providing Emotional Support, 17 NAVIGATION THROUGHOUT THE CANCER CARE CONTINUUM 18 EXAMPLES OF NAVIGATION SUCCESS STORIES 19 WHO SHOULD RECEIVE NAVIGATION SERVICES? 20 WHO NAVIGATES? 22 EVIDENCE ON PATIENT NAVIGATION 25 EXAMPLES OF RESEARCH NEEDS 27 REAL-WORLD MODELS OF PATIENT NAVIGATION 29 Christiana Care Health System, 30 Women’s Wellness Connection, 30 American Cancer Society Patient Navigation Program, 31 Cancer Patient Navigators of Georgia, 32 LIVESTRONG Cancer Navigation Program, 32 xv PREPUBLICATION COPY—Uncorrected Proofs

xvi CONTENTS Wayfinder, 33 DuPage Patient Navigation Collaborative, 34 Dana-Farber Cancer Institute Patient Navigation Pilot, 34 Massachusetts General Hospital, 36 Apoyo con Cariño Palliative Care Program, 39 Patient Care Connect Program, 40 Sutter Health Pilot Navigation Program, 42 Blue Distinction® Centers for Cancer Care, 43 Geisinger Oncology Navigator Program, 44 LESSONS LEARNED 45 Assessing Needs and Resources, 45 Making Services Convenient for Patients, 47 Tailoring Services to Fit Community and Individual Needs, 48 Staffing Appropriately, 49 Defining the Navigator Role, 50 Building in Program Metrics and Evaluation, 51 Communicating with Team Members, 52 Program Champions, 53 Coordinating and Supervising Services, 53 Choosing a Care Setting, 54 NAVIGATION RESOURCES 55 Program Design, 55 Tracking, 55 Distress Assessment, 56 Telehealth, 56 Standards, 57 PATIENT NAVIGATION COMPETENCIES AND STANDARDS 57 Commission on Cancer Standards, 59 National Oncology Patient Navigation Competencies, 60 PATIENT NAVIGATION TRAINING AND CERTIFICATION 62 EXAMPLES OF POLICY CHALLENGES AND OPPORTUNITIES 70 Increasing Affordability of Patient Navigation, 70 Making Patient Navigation a Nationwide Priority, 72 National Navigation Resource Clearinghouse, 74 RECENT POLICY INITIATIVES IN PATIENT NAVIGATION 74 Oncology Care Model, 74 Cancer Moonshot/Biden Cancer Initiative, 77 National Navigation Roundtable, 78 PREPUBLICATION COPY—Uncorrected Proofs

CONTENTS xvii WORKSHOP WRAP-UP 79 REFERENCES 80 APPENDIX A: STATEMENT OF TASK 85 APPENDIX B: WORKSHOP AGENDA 87 PREPUBLICATION COPY—Uncorrected Proofs

Boxes, Figures, and Table BOXES 1 Suggestions from Individual Workshop Participants to Improve Patient Navigation Programs in Oncology, 3 2 Disparities in Cancer Care, 8 3 Translating Research into Practice, 28 FIGURES 1 Structural elements of the ecology of breast cancer disparities and strategies to address them, 10 2 Cancer diagnosis and treatment pathway, 15 3 Patient navigation across the cancer care continuum, 19 4 Conceptual model for a clinical outreach program, 36 5 Patient Care Connected Program (PCCP) care map, 41 6 Lancaster General Health risk-based care model, 76 TABLE 1 Professional Certificate Programs, 64 xix PREPUBLICATION COPY—Uncorrected Proofs

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 xxi PREPUBLICATION COPY—Uncorrected Proofs

xxii ACRONYMS AND ABBREVIATIONS OCM Oncology Care Model ONS Oncology Nursing Society PCCP Patient Care Connect Program PN-BOT Patient Navigation Barriers and Outcomes Tool PNRP Patient Navigation Research Program REDCap Research Electronic Data Capture TEAM Together-Equitable-Accessible-Meaningful TRIP Translating Research Into Practice WWC Women’s Wellness Connection PREPUBLICATION COPY—Uncorrected Proofs

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Delivering high-quality cancer care to all patients presents numerous challenges, including difficulties with care coordination and access. Patient navigation is a community-based service delivery intervention designed to promote access to timely diagnosis and treatment of cancer and other chronic diseases by eliminating barriers to care, and has often been proposed and implemented to address these challenges. However, unresolved questions include where patient navigation programs should be deployed, and which patients should be prioritized to receive navigation services when resources are limited.

To address these issues and facilitate discussion on how to improve navigation services for patients with cancer, the National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine held a workshop on November 13 and 14, 2017. At this workshop, a broad range of experts and stakeholders, including clinicians, navigators, researchers, and patients, explored which patients need navigation and who should serve as navigators, and the benefits of navigation and current gaps in the evidence base.

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