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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing Quality Measures for Accountability in Community-Based Care for People with Serious Illness: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25202.
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Implementing Quality Measures for Accountability in Community-Based Care for People with Serious Illness PROCEEDINGS OF A WORKSHOP Laurene Graig, Sylara Marie Cruz, and Joe Alper, Rapporteurs Roundtable on Quality Care for People with Serious Illness Board on Health Care Services Board on Health Sciences Policy Health and Medicine Division

THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 This activity was supported by the Gordon and Betty Moore Foundation. Annual support for the roundtable’s activities is provided by Aetna Inc., Altarum Institute, American Academy of Hospice and Palliative Medicine, American Cancer Society, American Geriatrics Society, Anthem, Inc., Ascension Health, Association of Profes- sional Chaplains, Association of Rehabilitation Nurses, Blue Cross and Blue Shield of North Carolina, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Massachusetts, The California State University Institute for Palliative Care, Cambia Health Solutions, Cedars-Sinai Health System, Center to Advance Palliative Care, Centers for Medicare & Medicaid Services, Coalition to Transform Advanced Care, Common ­ ractice, Excellus BlueCross BlueShield, Federation of American Hospitals, P The ­ reenwall Foundation, The John A. Hartford Foundation, Hospice and Palliative G Nurses Association, Kaiser Permanente, Susan G. Komen, Gordon and Betty Moore Foundation, National Coalition for Hospice and Palliative Care, National Hospice and Palliative Care Organization, National Institute of Nursing Research, National Palliative Care Research Center, National Patient Advocate Foundation, National Quality Forum, The New York Academy of Medicine, Oncology Nursing Society, Patient-Centered Out- comes Research Institute, Sentara Healthcare, Social Work Hospice and Palliative Care Network, ­ upportive Care Coalition, UnitedHealth Group, and the National Academy S of Medicine. 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: 978-0-309-48207-3 International Standard Book Number-10: 0-309-48207-0 Digital Object Identifier: https://doi.org/10.17226/25202 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. Implementing quality measures for accountability in community-based care for people with serious illness: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/25202.

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental insti- tution to advise the nation on issues related to science and ­echnology. t Members are elected by their peers for outstanding contributions to research. 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 engineering to advising the nation. Members are elected by their peers for extraordinary 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 ­ ciences S 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 Sciences, 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, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

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 Academies, please visit www.nationalacademies.org/about/whatwedo.

PLANNING COMMITTEE FOR A WORKSHOP ON IMPLEMENTING QUALITY MEASURES FOR ACCOUNTABILITY IN COMMUNITY-BASED CARE FOR PEOPLE WITH SERIOUS ILLNESS1 AMY KELLEY (Co-Chair), Associate Professor, Icahn School of Medicine at Mount Sinai AMY MELNICK (Co-Chair), Executive Director, National Coalition for Hospice and Palliative Care STEVE CLAUSER, Program Director, Improving Healthcare Systems, Patient-Centered Outcomes Research Institute LAURA HANSON, Professor and Director, University of North Carolina Palliative Care Program PAMELA S. HINDS, Director of Nursing Research and Quality Outcomes, Children’s National Health System REBECCA A. KIRCH, Executive Vice President of Healthcare Quality and Value, National Patient Advocate Foundation MURALI N. NAIDU, Vice President, Chief Clinical Officer, Sentara Healthcare WENDY PRINS, Senior Advisor, Quality Innovation, National Quality Forum CHRISTINE RITCHIE, Professor, University of California, San Francisco, School of Medicine JOAN TENO, Professor of Medicine, Oregon Health & Science University Project Staff LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness SYLARA MARIE CRUZ, Research Assistant 1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing ­ peakers. The s responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution. v

SHARYL NASS, Director, Board on Health Care Services, and Director, National Cancer Policy Forum ANDREW M. POPE, Director, Board on Health Sciences Policy Consultant JOE ALPER, Consulting Writer vi

ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS1 LEONARD D. SCHAEFFER (Chair), Judge Robert Maclay Widney Chair and Professor, University of Southern California JAMES A. TULSKY (Vice Chair), Chair, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute; Chief, Division of Palliative Medicine, Brigham and Women’s Hospital; Professor of Medicine and Co-Director, Center for Palliative Care, Harvard Medical School JENNIFER BALLENTINE, Executive Director, The California State University Institute for Palliative Care ROBERT A. BERGAMINI, Medical Director, Palliative Care Services, Mercy Clinic Children’s Cancer and Hematology, representing the Supportive Care Coalition AMY J. BERMAN, Senior Program Officer, The John A. Hartford Foundation PATRICIA A. BOMBA, Vice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield SUSAN BROWN, Senior Director, Health Education, Susan G. Komen GRACE B. CAMPBELL, Assistant Professor, Department of Acute and Tertiary Care, University of Pittsburgh School of Nursing, representing the Association of Rehabilitation Nurses STEVE CLAUSER, Program Director, Improving Healthcare Systems, Patient-Centered Outcomes Research Institute JEFF COHN, Medical Director, Common Practice PATRICK CONWAY, President and Chief Executive Officer, Blue Cross and Blue Shield of North Carolina DAVID J. DEBONO, National Medical Director for Oncology, Anthem, Inc. CHRISTOPHER M. DEZII, Lead, Quality and Measure Development, State and Federal Payment Agencies, U.S. Value, Access and Payment, Bristol-Myers Squibb Company ANDREW DREYFUS, President and Chief Executive Officer, Blue Cross Blue Shield of Massachusetts 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. vii

CAROLE REDDING FLAMM, Executive Medical Director, Blue Cross Blue Shield Association MARK B. GANZ, President and Chief Executive Officer, Cambia Health Solutions ZIAD R. HAYDAR, Senior Vice President and Chief Clinical Officer, Ascension Health PAMELA S. HINDS, Director of Nursing Research and Quality Outcomes, Children’s National Health System HAIDEN HUSKAMP, 30th Anniversary Professor of Health Care Policy, Harvard Medical School KIMBERLY JOHNSON, Associate Professor of Medicine, Senior Fellow in the Center for the Study of Aging and Human Development, Duke University School of Medicine CHARLES N. KAHN III, President and Chief Executive Officer, Federation of American Hospitals REBECCA A. KIRCH, Executive Vice President of Healthcare Quality and Value, National Patient Advocate Foundation TOM KOUTSOUMPAS, Co-Founder, Coalition to Transform Advanced Care SHARI M. LING, Deputy Chief Medical Officer, Center for Clinical Standards and Quality, Centers for Medicare & Medicaid Services BERNARD LO, President and Chief Executive Officer, The Greenwall Foundation JOANNE LYNN, Director, Center for Elder Care and Advanced Illness, Altarum Institute DIANE E. MEIER, Director, Center to Advance Palliative Care AMY MELNICK, Executive Director, National Coalition for Hospice and Palliative Care JERI L. MILLER, Chief, Office of End-of-Life and Palliative Care Research, National Institute of Nursing Research, National Institutes of Health R. SEAN MORRISON, Director, National Palliative Care Research Center MURALI N. NAIDU, Vice President, Chief Clinical Officer, Sentara Healthcare BRENDA NEVIDJON, Chief Executive Officer, Oncology Nursing Society viii

HAROLD L. PAZ, Executive Vice President and Chief Medical Officer, Aetna Inc. SHARON SCRIBNER PEARCE, Vice President, Policy, National Hospice and Palliative Care Organization JUDITH R. PERES, Long-Term and Palliative Care Consultant, Clinical Social Worker and Board Member, Social Work Hospice and Palliative Care Network PHILLIP A. PIZZO, Founding Director, Stanford Distinguished Careers Institute; Former Dean, and David and Susan Heckerman Professor of Pediatrics and of Microbiology and Immunology, Stanford School of Medicine WENDY PRINS, Senior Advisor, Quality Innovation, National Quality Forum THOMAS M. PRISELAC, President and Chief Executive Officer, Cedars-Sinai Health System JOANNE REIFSNYDER, Executive Vice President, Clinical Operations and Chief Nursing Officer, Genesis Healthcare, representing the Hospice and Palliative Nurses Association JUDITH A. SALERNO, President, The New York Academy of Medicine DIANE SCHWEITZER, Acting Chief Program Officer, Patient Care Program, Gordon and Betty Moore Foundation KATRINA M. SCOTT, Oncology Chaplain, Massachusetts General Hospital, representing the Association of Professional Chaplains KATHERINE SHARPE, Senior Vice President, Patient and Caregiver Support, American Cancer Society JOSEPH W. SHEGA, Regional Medical Director, VITAS Hospice Care, representing the American Geriatrics Society CHRISTIAN SINCLAIR, Outpatient Palliative Oncology Lead, Division of Palliative Medicine, University of Kansas Health System, representing the American Academy of Hospice and Palliative Medicine TANYA STEWART, Senior Medical Director, UnitedHealthcare Retiree Solutions SUSAN ELIZABETH WANG, Regional Lead for Shared Decision- Making and Advance Care Planning, Southern California Permanente Medical Group, Kaiser Permanente ix

Roundtable on Quality Care for People with Serious Illness Staff LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness SYLARA MARIE CRUZ, Research Assistant PATRICK BURKE, Financial Associate SHARYL NASS, Director, Board on Health Care Services, and Director, National Cancer Policy Forum ANDREW M. POPE, Director, Board on Health Sciences Policy x

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: MAUREEN HENRY, National Committee for Quality Assurance TED LONG, NYC Health + Hospitals DEBRA SALIBA, University of California, Los Angeles, JH Borun Center for Gerontological Research ERIC SCHNEIDER, The Commonwealth Fund LEANNE YANNI, Bon Secours Palliative 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 KATHRYN McDONALD, Stanford School of Medicine. She was responsible for making certain that an inde- xi

xii REVIEWERS pendent 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 The National Academies of Sciences, Engineering, and Medicine’s Roundtable on Quality Care for People with Serious Illness wishes to express its sincere gratitude to Planning Committee Co-Chairs Amy Kelley ­ and Amy Melnick for their valuable contributions to the development of this workshop. The roundtable also wishes to thank all of the members of the planning committee, who collaborated to ensure a workshop complete with informative presentations and rich discussions. Finally, the roundtable wants to thank the speakers and moderators, who generously shared their expertise and their time with workshop participants. We are grateful to the Gordon and Betty Moore Foundation for its sponsorship of this workshop. Ongoing support from the many annual sponsors of the roundtable is critical to its work. The roundtable’s sponsors include Aetna Inc., Altarum Institute, American Academy of Hospice and Palliative Medicine, American Cancer Society, American Geriatrics Society, Anthem, Inc., Ascension Health, Association of Professional Chaplains, ­ Association of Rehabilitation Nurses, Blue Cross and Blue Shield of North Carolina, Blue Cross Blue Shield Association, Blue Cross Blue Shield of Massachusetts, The California State University Institute for Palliative Care, Cambia Health Solutions, Cedars-Sinai Health System, Center to Advance Palliative Care, Centers for Medicare & Medicaid Services, Coali- tion to Transform Advanced Care, Common Practice, Excellus BlueCross BlueShield, Federation of American Hospitals, The Greenwall Foundation, xiii

xiv ACKNOWLEDGMENTS The John A. Hartford Foundation, Hospice and Palliative Nurses Asso- ciation, Kaiser Permanente, Susan G. Komen, Gordon and Betty Moore Foundation, National Coalition for Hospice and Palliative Care, National Hospice and Palliative Care Organization, National Institute of Nurs- ing Research, National Palliative Care Research Center, National Patient Advocate Foundation, National Quality Forum, The New York Academy of Medicine, Oncology Nursing Society, Patient-Centered Outcomes Research Institute, Sentara Healthcare, Social Work Hospice and Palliative Care Network, Supportive Care Coalition, UnitedHealth Group, and the National Academy of Medicine.

Contents ACRONYMS AND ABBREVIATIONS xix INTRODUCTION 1 Quality Measures for Accountability in Community-Based Serious Illness Care, 4 Organization of Workshop and Proceedings, 5 THE PATIENT–FAMILY PERSPECTIVE 7 GAPS, CHALLENGES, AND OPPORTUNITIES IN IMPLEMENTING QUALITY MEASURES FOR ACCOUNTABILITY 16 Measuring High-Quality Care, 16 Challenges in Implementing Quality Measures for Serious Illness Care, 19 Discussion, 24 INNOVATIVE APPROACHES TO IMPLEMENTING QUALITY MEASURES FROM THE PERSPECTIVES OF HEALTH CARE PROVIDERS AND PAYERS 26 Lessons from Blue Shield of California’s Palliative Care Program, 27 Aspire Health’s Model of Home-Based Palliative Care, 31 Anthem’s Perspective on Quality Measures, 33 Discussion, 36 xv

xvi CONTENTS MEASURE REVIEW AND ENDORSEMENT REDESIGN AT THE NATIONAL QUALITY FORUM 37 INNOVATIVE APPROACHES AND POLICY LEVERS FOR IMPLEMENTING QUALITY MEASURES FROM THE PERSPECTIVES OF PUBLIC PROGRAMS 44 Meaningful Measures Initiative at CMS, 45 CMS Quality Payment Program, 46 Caring for Patients with Chronic Complex Illnesses at the U.S. Department of Veterans Affairs, 48 Medicare Advantage Programs, 49 A Congressional Perspective, 53 Discussion, 55 FUTURE USE OF QUALITY MEASURES FOR ACCREDITATION TO SUPPORT ACCOUNTABILITY FOR HIGH-QUALITY CARE 56 Accreditation and Certification at The Joint Commission, 58 Measurement in the Context of Hospice and Home Health Care, 60 Challenges of Quality Improvement, 61 Discussion, 62 SUPPORTING CLINICAL COMMUNITIES FOR QUALITY AND ACCOUNTABILITY 64 A Health Care Information Technology Company’s Approach to Support Accountability, 67 Real-World Implementation of Quality Measures, 68 Discussion, 71 CHARTING A PATH FORWARD 74 REFERENCES 77 APPENDIX A: Statement of Task 81 APPENDIX B: Workshop Agenda 83

Boxes and Figures BOXES 1  Key Definitions, 3 2 Suggestions Made by Individual Workshop Participants on Implementing Quality Measures for Accountability in Community- Based Care for People with Serious Illness, 8 3  Measures Drive Improvement If . . ., 18 FIGURES 1 A nested population model of serious illness, 23 2 Simulation of various approaches to identify patients with serious illness, 24 3  redesigned consensus development process for measure The endorsement at NQF features two cycles per year, 38 4 NQF’s prioritization initiative process, 39 5 NQF’s measure prioritization criteria, 41 6 Focus areas for the CMS Meaningful Measures Initiative, 47 7 2016 survey results of high-risk PIM and PACT patients, 50 8 Percentage of Medicare beneficiaries hospitalized or deceased in 2015 by 2014 high-need status, 51 xvii

xviii BOXES AND FIGURES 9 Percentage of high-need and non-high-need patients enrolled in low- quality Medicare Advantage plans, 52 10  Comparison PCQN pain report, 66

Acronyms and Abbreviations CAHPS Consumer Assessment of Healthcare Providers and Systems CHIP Children’s Health Insurance Program CMS Centers for Medicare & Medicaid Services EHR electronic health record HCBS Home- and Community-Based Services IOM Institute of Medicine MDS Minimum Data Set MedPAC Medicare Payment Advisory Commission MIPS Merit-Based Incentive Payment System MRI magnetic resonance imaging NCQA National Committee for Quality Assurance NQF National Quality Forum PACT Patient Aligned Care Team PCQN Palliative Care Quality Network PIM PACT Intensive Management POLST physician’s orders for life-sustaining treatment xix

xx ACRONYMS AND ABBREVIATIONS PTCD pontine tegmental cap dysplasia UCSF University of California, San Francisco UNC University of North Carolina at Chapel Hill VA U.S. Department of Veterans Affairs VHA Veterans Health Administration

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Millions of Americans of all ages face the challenge of living with serious illnesses such as advanced cancer, heart, or lung disease. Many people with serious illness are increasingly cared for in community settings. While the number of community-based programs to provide care for those with serious illness has grown significantly, the quality of care provided is not consistent across geographic locations or care settings. Care for the serious illness population often features gaps in coordination across sites of care and poor patient and family perceptions as to the quality of care provided.

In an effort to better understand and facilitate discussions about the challenges and opportunities related to identifying and implementing quality measures for accountability purposes in community-based serious illness care, the National Academies of Sciences, Engineering, and Medicine held a public workshop on April 17, 2018, in Washington, DC. Workshop participants explored the current state of quality measurement for people with serious illness, their families, and caregivers, with the aim of identifying next steps toward effectively implementing measures to drive improvement in the quality of community-based care for those facing serious illness. This publication summarizes the presentations and discussions from the workshop.

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