THE LEARNING HEALTH SYSTEM SERIES
PRIORITIES
ON THE
HEALTH HORIZON
INFORMING PCORI’S STRATEGIC PLAN
Sarah M. Greene, Peter Embi, Meg Gaines, Beverley Johnson, Neil Powe, Jeffrey Schiff, Bruce Siegel, Emily Stewart, and Consuelo Wilkins, Editors
WASHINGTON, DC
NAM.EDU
NATIONAL ACADEMY OF MEDICINE 500 Fifth Street, NW Washington, DC 20001
This publication has undergone peer review according to procedures established by the National Academy of Medicine (NAM). Publication by the NAM signifies that it is the product of a carefully considered process and is a contribution worthy of public attention but does not constitute endorsement of conclusions and recommendations by the NAM. The views presented in this publication are those of individual contributors and do not represent formal consensus positions of the authors’ organizations; the NAM; or the National Academies of Sciences, Engineering, and Medicine.
This activity was supported by a contract between the National Academy of Medicine and the Patient-Centered Outcomes Research Institute.
Digital Object Identifier: https://doi.org/10.17226/27109
Library of Congress Control Number: 2022933547
Copyright 2022 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
Suggested citation: Greene, S. M., P. Embi, M. Gaines, B. Johnson, N. Powe, J. Schiff, B. Siegel, E. Stewart, and C. Wilkins, Editors. 2022. Priorities on the Health Horizon: Informing PCORI’s Strategic Plan. NAM Special Publication. Washington, DC: National Academy of Medicine. .
“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
—GOETHE
ABOUT THE NATIONAL ACADEMY OF MEDICINE
The National Academy of Medicine is one of three Academies constituting the National Academies of Sciences, Engineering, and Medicine (the National Academies). The National Academies 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.
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.
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. John L. Anderson is president.
The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on issues of health, health care, and biomedical science and technology. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.
Learn more about the National Academy of Medicine at NAM.edu.
STEERING COMMITTEE AND WORKING GROUP PARTICIPANTS
NEIL POWE (Chair), University of California, San Francisco
PETER EMBI, Regenstrief Institute (until December 2021)
MEG GAINES, University of Wisconsin Law School
BEVERLEY JOHNSON, Institute for Patient- and Family-Centered Care
JEFFREY SCHIFF, AcademyHealth
BRUCE SIEGEL, America’s Essential Hospitals
EMILY STEWART, Community Catalyst
CONSUELO WILKINS, Vanderbilt University Medical Center
NAM Staff
Development of this publication was facilitated by contributions of the following NAM staff, under the guidance of J. Michael McGinnis, Leonard D. Schaeffer Executive Officer and Executive Director of the NAM Leadership Consortium: Collaboration for a Value & Science-Driven Health System:
SARAH M. GREENE, Senior Advisor
JENNA OGILVIE, Deputy Director of Communications
MICHAEL COCCHIOLA, Research Associate
PEAK SEN CHUA, Consultant
AYODOLA ANISE, Deputy Director, NAM Leadership Consortium
RADHIKA HIRA, Communications Officer
ALLISON LESTER, Senior Program Assistant
ARIANA BAILEY, Senior Program Assistant (until August 2021)
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REVIEWERS
This Special Publication was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with review procedures established by the National Academy of Medicine (NAM).
We wish to thank the following individuals for their contributions:
GWEN DARIEN, National Patient Advocate Foundation
RACHEL HESS, University of Utah, Clinical and Translational Science Institute
FRANK OPELKA, American College of Surgeons
The reviewers listed above provided many constructive comments and suggestions, but they were not asked to endorse the content of the publication and did not see the final draft before it was published. Review of this publication was overseen by SARAH M. GREENE, Senior Advisor, and J. MICHAEL McGINNIS, Leonard D. Schaeffer Executive Officer. Responsibility for the final content of this publication rests entirely with the editors and the NAM.
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PREFACE
Collaboration and partnership are key to the generation and application of new knowledge. This is particularly important for knowledge or evidence-based information that improves health and health care, given its dynamics and complexity. Many stakeholders—including patients, clinicians, researchers, and stakeholders from the broader health community—are intrinsically committed to collaborative partnerships to drive momentum and illuminate the path for progress. Engaging with stakeholders for guidance along the path in identifying priorities, generating evidence, and applying that knowledge toward improved health and health care delivery builds trust. Trust is both a foundational element and the fuel for such collaborative partnerships.
The National Academy of Medicine (NAM) and the Patient-Centered Outcomes Research Institute (PCORI) are aligned in their commitment to generating knowledge that improves health and health care, and in their commitment to leveraging partnerships to support the shared goal of an equitable, stakeholder-driven, evidence-guided, patient-centered system of care. The NAM’s ability to marshal expertise by convening diverse and influential stakeholders spurs momentum and produces critical insights that drive action. PCORI’s approach to patient-centered research centers on meaningful collaboration with stakeholders that values the unique contributions of all research partners—an important and vital paradigm for the field. As such, our two organizations worked together to facilitate an expansive dialogue with key stakeholders, to engender trust through a focus on shared commitments to progress on improving health for all Americans in the decade ahead. Through the discussions convened, these stakeholders provided generative and incisive perspectives that served as important reference points to PCORI’s strategic planning process and development of its National Priorities for Health. This Special Publication, Priorities on the Health Horizon: Informing PCORI’s Strategic Plan, is the product of these discussions and summarizes significant themes on the health horizon.
The partnership between our two organizations identified key issues and reinforced the need for engagement and collective learning—two bedrock aspects of PCORI’s approach to its mission. Moreover, the meetings served to emphasize the facilitative role that both the NAM and PCORI play as trustworthy connectors across sectors, organizations, and stakeholders. Through engagement and collective learning, PCORI funds research on topics relevant to patients and stakeholders, thereby driving knowledge and catalyzing action. Given the myriad contributors to health and health care, strategic learning partnerships, purposeful collaboration, and cross-sector connection are instrumental to creating innovative approaches to transform health care to be more patient-centered, improving health outcomes for all, and building and sustaining trust with patients, their caregivers, and stakeholders across the health and research communities. We look forward to this progress.
Nakela L. Cook, M.D., M.P.H.
Patient-Centered Outcomes Research Institute
J. Michael McGinnis, M.D., M.P.P.
National Academy of Medicine
CONTENTS
7 Patients Shaping the Health Horizon
8 Strategic Priorities for the Field
A Topic Briefs for March 15–16, 2021 Meeting
B Slide Presentations for March 15–16, 2021 Meeting
C Agenda for March 15–16, 2021 Meeting
D Agenda for April 27, 2021 Meeting
E Presenter and Facilitator Biographies for March 15–16, 2021 Meeting
F Presenter and Facilitator Biographies for April 27, 2021 Meeting
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ACRONYMS AND ABBREVIATIONS
| ACM | Association of Computing Machinery |
| ACO | accountable care organization |
| ACT | Adult Changes in Thought |
| AHRQ | Agency for Healthcare Research and Quality |
| AI | artificial intelligence |
| AMA | American Medical Association |
| API | application programming interface |
| CDC | Centers for Disease Control and Prevention |
| CER | comparative clinical effectiveness research |
| CLIIR | Center for Clinical Informatics and Improvement Research |
| CMS | Centers for Medicare & Medicaid Services |
| COVID-19 | coronavirus disease 2019 |
| ED | emergency department |
| EHR | electronic health record |
| FDA | Food and Drug Administration |
| GDP | gross domestic product |
| HHS | Department of Health and Human Services |
| IOM | Institute of Medicine |
| IU | Indiana University |
| JAMA | Journal of the American Medical Association |
| LGBTQ+ | lesbian, gay, bisexual, transgender, queer, and questioning |
| MACRA | Medicare Access and CHIP Reauthorization Act of 2015 |
| MORhELab | Measuring & Operationalizing Racism to Achieve Health Equity |
| NAM | National Academy of Medicine |
| NASEM | National Academies of Sciences, Engineering, and Medicine |
| NIH | National Institutes of Health |
| NPAF | National Patient Advocacy Foundation |
| OCTO | Office of the Chief Technology Officer |
| ODPHP | Office of Disease Prevention and Health Promotion |
| OECD | Organisation for Economic Co-operation and Development |
| OMH | Office of Minority Health |
| ONC | Office of the National Coordinator for Health IT |
| OSU | The Ohio State University |
| PCOR | patient-centered outcomes research |
| PCORI | Patient-Centered Outcomes Research Institute |
| PCORnet® | The National Patient-Centered Clinical Research Network |
| PFCC | patient- and family-centered care |
| QUERI | Quality Enhancement Research Initiative |
| RWJF | Robert Wood Johnson Foundation |
| SARS-CoV-2 | severe acute respiratory syndrome coronavirus 2 |
| STEM | science, technology, engineering, and mathematics |
| VA | Department of Veterans Affairs |
| VUMC | Vanderbilt University Medical Center |
| WHO | World Health Organization |
