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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.
×

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

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

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.
×

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 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, Coalition to Transform Advanced Care, Common Practice, Excellus BlueCross BlueShield, Federation of American Hospitals, The Greenwall Foundation, The John A. Hartford Foundation, Hospice and Palliative 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 Outcomes Research Institute, Sentara Healthcare, Social Work Hospice and Palliative Care Network, Supportive Care Coalition, UnitedHealth Group, and the National Academy 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

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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.

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.
×

Image

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.

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Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

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.
×

Image

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 participants 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.

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.
×

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 speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.

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.
×

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

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.
×

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.

Page viii Cite
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.
×

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

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.
×

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

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.
×

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

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.
×

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:

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 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 KATHRYN McDONALD, Stanford School of Medicine. She was responsible for making certain that an inde-

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.
×

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.

Page xiii Cite
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.
×

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, Coalition to Transform Advanced Care, Common Practice, Excellus BlueCross BlueShield, Federation of American Hospitals, The Greenwall Foundation,

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.
×

The John A. Hartford Foundation, Hospice and Palliative 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 Outcomes Research Institute, Sentara Healthcare, Social Work Hospice and Palliative Care Network, Supportive Care Coalition, UnitedHealth Group, and the National Academy of Medicine.

Page xviii Cite
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.
×
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.
×

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
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.
×
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
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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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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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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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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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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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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