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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

THE LEARNING HEALTH SYSTEM SERIES

ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE

PATIENTS CHARTING THE COURSE

Citizen Engagement and the Learning Health System

Workshop Summary

LeighAnne Olsen, Robert S. Saunders, and J. Michael McGinnis,
Editors and Rapporteurs

INSTITUTE OF MEDICINE
              OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

THE NATIONAL ACADEMIES PRESS    500 Fifth Street, N.W.    Washington, DC 20001

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.

This project was supported by the Agency for Healthcare Research and Quality, AstraZeneca, Blue Shield of California Foundation, California Health Care Foundation, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Charina Endowment Fund, Department of Veterans Affairs, Food and Drug Administration, Johnson & Johnson, Kaiser Permanente, National Institutes of Health, Office of the National Coordinator for Health IT, The Peter G. Peterson Foundation, sanofi-aventis, Stryker, and the UnitedHealth Foundation. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project.

International Standard Book Number-13: 0-978-0-309-14993-8
International Standard Book Number-10: 0-309-14993-2

Additional copies of this report are available from The National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu.

For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu.

Copyright 2011 by the National Academy of Sciences. All rights reserved.

Printed in the United States of America

The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

Suggested citation: IOM (Institute of Medicine). 2011. Patients charting the course: Citizen engagement and the learning health system: Workshop summary. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

Knowing is not enough; we must apply.
Willing is not enough; we must do.
”      

                                                —Goethe

image

INSTITUTE OF MEDICINE
              OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

THE NATIONAL ACADEMIES

Advisers to the Nation on Science, Engineering, and Medicine

The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences.

The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering.

The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine.

The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council.

www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE1

Mark B. McClellan (Chair, 2011-Present), Director, Engelberg Center for Healthcare Reform, The Brookings Institution

Denis A. Cortese (Chair, 2006-2011), Emeritus President and Chief Executive Officer, Mayo Clinic; Foundation Professor, ASU

Donald Berwick, Administrator, Centers for Medicare & Medicaid Services (ex officio)

Bruce G. Bodaken, Chairman, President, and Chief Executive Officer, Blue Shield of California

David R. Brennan, Chief Executive Officer, AstraZeneca PLC

Paul Chew, Chief Science Officer and CMO, sanofi-aventis U.S., Inc.

Carolyn M. Clancy, Director, Agency for Healthcare Research and Quality (ex officio)

Michael J. Critelli, Chief Executive Officer, Dossia

Helen Darling, President, National Business Group on Health

Thomas R. Frieden, Director, Centers for Disease Control and Prevention (designee: Chesley Richards) (ex officio)

Patricia A. Gabow, Chief Executive Officer, Denver Health & Hospital Authority

Atul Gawande, General and Endocrine Surgeon, Brigham and Women’s Hospital

Gary L. Gottlieb, President and CEO, Partners HealthCare System

James A. Guest, President, Consumers Union

George C. Halvorson, Chairman and Chief Executive Officer, Kaiser Permanente

Margaret A. Hamburg, Commissioner, Food and Drug Administration (ex officio)

James Heywood, Chairman, PatientsLikeMe

Carmen Hooker Odom, President, Milbank Memorial Fund

Ardis Hoven, Immediate Past Board Chair, American Medical Association

Brent James, Chief Quality Officer and Executive Director, Institute for Health Care Delivery Research, Intermountain Healthcare

Michael M. E. Johns, Chancellor, Emory University

Craig Jones, Director, Vermont Blueprint for Health

Cato T. Laurencin, Director, Regenerative Engineering, University of Connecticut

Stephen P. MacMillan, President and Chief Executive Officer, Stryker

________________

1 Formerly the Roundtable on Evidence-Based Medicine, Institute of Medicine forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

Sheri S. McCoy, Vice Chair, Executive Committee, Johnson & Johnson

Farzad Mostashari, National Coordinator, Office of the National Coordinator for Health IT (ex officio)

Elizabeth G. Nabel, President, Brigham and Women’s Hospital

Mary D. Naylor, Professor and Director of Center for Transitions in Health, University of Pennsylvania

Peter Neupert, Corporate Vice President, Health Solutions Group, Microsoft Corporation

William D. Novelli, Former CEO, AARP; Professor, Georgetown University

Jonathan B. Perlin, Chief Medical Officer and President, Clinical and Physician Services, HCA, Inc.

Robert A. Petzel, Under Secretary (Health), Department of Veterans Affairs (ex officio)

Richard Platt, Professor and Chair, Harvard Medical School and Harvard Pilgrim Health Care

John C. Rother, Group Executive Officer, AARP

John W. Rowe, Professor, Mailman School of Public Health, Columbia University

Susan Shurin, Acting Director, National Heart, Lung, and Blood Institute (ex officio)

Mark D. Smith, President and CEO, California HealthCare Foundation

Glenn D. Steele, President and Chief Executive Officer, Geisinger Health System

Reed D. Tuckson, Executive VP and Chief of Medical Affairs, UnitedHealth Group

Frances M. Visco, President, National Breast Cancer Coalition

Jonathan Woodson, Assistant Secretary for Health Affairs, Department of Defense (designee: Michael Dinneen) (ex officio)

Workshop Planning Committee2

Jay Bernhardt, Centers for Disease Control and Prevention

Michael Fordis, John M. Eisenberg Center, Baylor College

Michael Lauer, National Heart, Lung, and Blood Institute

Joel Kupersmith, Veterans Health Administration

Murray Ross, Kaiser Foundation Health Plan

Karen Smith, AstraZeneca PLC (formerly, now with Allergan, Inc.)

Myrl Weinberg, National Health Council

________________

2 Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

Roundtable Staff

Neha Agarwal, Intern (through August 2010)

Christie Bell, Financial Associate

Malcolm Biles, Program Assistant (through October 2010)

Claudia Grossmann, Program Officer

J. Michael McGinnis, Senior Scholar and Executive Director

LeighAnne Olsen, Program Officer (through June 2010)

Brian Powers, Senior Program Assistant

Valerie Rohrbach, Program Assistant

Julia Sanders, Program Assistant

Robert Saunders, Program Officer

Leigh Stuckhardt, Program Associate

Kate Vasconi, Senior Program Assistant (through January 2011)

Catherine Zweig, Senior Program Assistant (through June 2010)

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Reviewers

This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:

Adam M. Clark, FasterCures

Marribeth Shannon, California HealthCare Foundation

Jason Spangler, Partnership for Prevention

Myrl Weinberg, National Health Council

Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the final draft of the report before its release. The review of this report was overseen by Joseph E. Scherger, University of California, San Diego. Appointed by the National Research Council and the Institute of Medicine, he was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the editors and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

Institute of Medicine
Roundtable on Value & Science-Driven Health Care
Charter and Vision Statement

The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care has been convened to help transform the way evidence on clinical effectiveness is generated and used to improve health and health care. Participants have set a goal that, by the year 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to-date clinical information, and will reflect the best available evidence. Roundtable members will work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possible solutions, and the priorities for action, and will marshal the resources of the sectors represented on the Roundtable to work for sustained public–private cooperation for change.

******************************************

The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care has been convened to help transform the way evidence on clinical effectiveness is generated and used to improve health and health care. We seek the development of a learning health system that is designed to generate and apply the best evidence for the collaborative healthcare choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care.

Vision: Our vision is for a healthcare system that draws on the best evidence to provide the care most appropriate to each patient, emphasizes prevention and health promotion, delivers the most value, adds to learning throughout the delivery of care, and leads to improvements in the nation’s health.

Goal: By the year 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to-date clinical information, and will reflect the best available evidence. We feel that this presents a tangible focus for progress toward our vision, that Americans ought to expect at least this level of performance, that it should be feasible with existing resources and emerging tools, and that measures can be developed to track and stimulate progress.

Context: As unprecedented developments in the diagnosis, treatment, and long-term management of disease bring Americans closer than ever to the promise of personalized health care, we are faced with similarly unprecedented challenges to identify and deliver the care most appropriate for individual needs and conditions. Care that is important is often not delivered. Care that is delivered is often not important. In part, this is due to our failure to apply the evidence we have about the medical care that is most effective—a failure related to shortfalls in provider knowledge and accountability, inadequate care coordination and support, lack of insurance, poorly aligned payment incen-

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

tives, and misplaced patient expectations. Increasingly, it is also a result of our limited capacity for timely generation of evidence on the relative effectiveness, efficiency, and safety of available and emerging interventions. Improving the value of the return on our healthcare investment is a vital imperative that will require much greater capacity to evaluate high-priority clinical interventions, stronger links between clinical research and practice, and reorientation of the incentives to apply new insights. We must quicken our efforts to position evidence development and application as natural outgrowths of clinical care—to foster health care that learns.

Approach: The IOM Roundtable on Value & Science-Driven Health Care serves as a forum to facilitate the collaborative assessment and action around issues central to achieving the vision and goal stated. The challenges are myriad and include issues that must be addressed to improve evidence development, evidence application, and the capacity to advance progress on both dimensions. To address these challenges, as leaders in their fields, Roundtable members will work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possible solutions, and the priorities for action, and will marshal the resources of the sectors represented on the Roundtable to work for sustained public–private cooperation for change.

Activities include collaborative exploration of new and expedited approaches to assessing the effectiveness of diagnostic and treatment interventions, better use of the patient care experience to generate evidence on effectiveness, identification of assessment priorities, and communication strategies to enhance provider and patient understanding and support for interventions proven to work best and deliver value in health care.

Core concepts and principles: For the purpose of the Roundtable activities, we define evidence-based medicine broadly to mean that, to the greatest extent possible, the decisions that shape the health and health care of Americans—by patients, providers, payers, and policy makers alike—will be grounded on a reliable evidence base, will account appropriately for individual variation in patient needs, and will support the generation of new insights on clinical effectiveness. Evidence is generally considered to be information from clinical experience that has met some established test of validity, and the appropriate standard is determined according to the requirements of the intervention and clinical circumstance. Processes that involve the development and use of evidence should be accessible and transparent to all stakeholders.

A common commitment to certain principles and priorities guides the activities of the Roundtable and its members, including the commitment to the right health care for each person; putting the best evidence into practice; establishing the effectiveness, efficiency, and safety of medical care delivered; building constant measurement into our healthcare investments; the establishment of healthcare data as a public good; shared responsibility distributed equitably across stakeholders, both public and private; collaborative stakeholder involvement in priority setting; transparency in the execution of activities and reporting of results; and subjugation of individual political or stakeholder perspectives in favor of the common good.

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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Foreword

Over the past decade, much attention has focused on rising costs and inadequate access in the U.S. healthcare system. However, another vital shortcoming of the current system has been its inability to truly maximize the health of individuals. As stated in the Charter of the Roundtable on Value & Science-Driven Health Care, too much care that is important is often not delivered, and too much care that is delivered is often not important.

In 2006, the Institute of Medicine chartered the Roundtable (originally, the Roundtable on Evidence-Based Medicine) to engage key stakeholders in a discussion of ways to transform healthcare delivery in this country to ensure that all Americans are receiving the best care. The Roundtable brings together patients and consumers, providers, researchers, health product manufacturers, payers, employees, and policy makers to discuss health reform priorities in a neutral venue and identify key impediments to progress toward a patient-centered learning health system. This vision of the learning health system, developed by the Roundtable, describes a health infrastructure characterized by evidence-based care that ensures proper decision making for each patient and provider, and consequently generates scientific evidence as a natural course of care. To accelerate progress toward this vision, the Roundtable convened leaders, researchers, and policy makers from the healthcare sector for a public workshop, Patients Charting the Course: Citizen Engagement and the Learning Health System.

This compilation summarizes the presentations and discussions from the workshop, which provide an overview of the nature and promise of the learning healthcare system for achieving a culture of patient-centeredness,

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

science, and value. The contributions and insights in this volume are imperative in formulating strategies to reform the U.S. healthcare system and improve patient-care outcomes.

I would like to offer my personal thanks to the members of the Roundtable who advocate for better health for Americans, to the Roundtable staff for their contributions to this publication and for organizing the activities, and to the sponsors who made this discussion possible: the Agency for Healthcare Research and Quality, AstraZeneca, Blue Shield of California Foundation, California Health Care Foundation, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Charina Endowment Fund, Department of Veterans Affairs, Food and Drug Administration, Johnson & Johnson, Kaiser Permanente, National Institutes of Health, Office of the National Coordinator for Health IT, The Peter G. Peterson Foundation, sanofi-aventis, Stryker, and the UnitedHealth Foundation.

Harvey V. Fineberg, M.D., Ph.D.
President, Institute of Medicine   

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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Preface

Patients Charting the Course: Citizen Engagement and the Learning Health System summarizes the 2-day workshop convened in April 2010 to identify and reflect upon current strategies and programs advancing public understanding of a transformative, patient-centered learning health system. Stakeholders and leaders within the health sector identified patients and providers as the groups who must be fully engaged to reform the current health system infrastructure, and discussed ways to involve these key constituents. The meeting provided a forum for participants to further discuss issues in communication strategies around science-driven care, patient engagement, and health information technology. This volume of presentations and discussions provides insights and reflections from government leaders, patient advocacy groups, health providers, manufacturers, and other key stakeholders about the issues that must be addressed to reform the way evidence is generated and used to improve health and health care. Participants discussed issues such as the structural details of a system of real-time and continuous learning that anticipates research needs and produces evidence that is timely and applicable; the importance of clinical data, health management, and health information technology as drivers during the information age; patient engagement to improve science and value; and the formation of a patient-centered culture focused on applying evidence and embracing team-based healthcare approaches.

The vision of the IOM Roundtable on Value & Science-Driven Health Care is for a learning health system in which evidence is both applied to ensure best care practices and generated in a timely manner. Since its inception in 2006, the Roundtable has set out to help realize this vision through

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

the involvement and support of senior leadership from key healthcare stakeholders. In engaging the nation’s leaders in workshops and other activities, Roundtable members and colleagues provide guidance on topics important to a patient-centered, integrated system. The objective of this workshop was to assess the current situation and the progress that has been made toward a learning health system, with a specific focus on effective strategies to improve public and patient understanding of the system’s transformative nature and methods to involve both in the change. The workshop provided a venue for leaders to share their perspectives on methods to enhance stakeholder engagement in building a new health infrastructure, as well as how to develop effective communication strategies around evidence-based care, patient self-management, and health information technology. In the discussions, fundamental ideas emerged on the roles and strategies for patients, providers, and systems as elements in the learning health system.

Participants articulated the numerous opportunities that have been made possible by the passage of the Patient Protection and Affordable Care Act of 2010 and the subsequent challenge of realizing the potential of this new, transformative platform. Despite this challenge, presenters focused on the use of health information technology to drive evidence-based care and the importance of improving the effectiveness of communication between patients and providers. Workshop discussions also highlighted continuous evaluation and collaboration across healthcare sectors as necessary elements that must be in place for the learning health system to be actualized. The Roundtable will follow this workshop with deeper consideration of a number of the highlighted issues through future workshops, commissioned papers, collaborative activities, and public communication efforts. Although the challenges are formidable—as they always are with culture change—Roundtable members, colleagues, and stakeholders are committed and well-equipped to accelerate the progress of a learning health system.

Multiple individuals and organizations donated their valuable time toward the development of this publication. We would like to acknowledge and offer strong appreciation for the contributors to this volume, for the care and thought that went into their analyses and presentations, for the ideas and observations they shared at the workshops, and for their contributions to this summary publication. In this respect, we should underscore that this volume contains a collection of individually authored papers and intends to convey only the views and beliefs of those participating in the workshops, not the express opinions of the Roundtable on Value & Science-Driven Health Care, its members, its sponsors, or the Institute of Medicine.

We are especially indebted to the members of the Planning Committee, which crafted this unusually productive and path-breaking discussion series. The members of this stellar group were: Jay Bernhardt (Centers for Disease Control and Prevention), Michael Fordis (John Baylor College),

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Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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Michael Lauer (National Heart, Lung, and Blood Institute), Joel Kupersmith (Veterans Health Administration), Murray Ross (Kaiser Foundation Health Plan), Karen Smith (formerly of AstraZeneca, now with Allergan), and Myrl Weinberg (National Health Council).

A number of Roundtable staff played instrumental roles in coordinating the workshops and translating the workshop proceedings into this summary, including Neha Agarwal, Christie Bell, Malcolm Biles, Claudia Grossmann, LeighAnne Olsen, Brian Powers, Robert Saunders, Kate Vasconi, and Catherine Zweig. We would also like to thank Greta Gorman, Christine Stencel, Vilija Teel, and Jordan Wyndelts for helping to coordinate the various aspects of review, production, and publication.

We have the potential for a transformative learning health system that could revolutionize the way care is delivered and understood. While great strides have already been made with new policy, sturdy dedication and engagement will continue to be instrumental as healthcare delivery in the United States is restructured. We look forward to building upon the ideas that have emerged in this workshop and realizing a learning health system.

Denis A. Cortese
Chair, Roundtable on Value & Science-Driven Health Care
(2006-2011)

Mark B. McClellan
Chair, Roundtable on Value & Science-Driven Health Care
(2011-Present)

J. Michael McGinnis
Executive Director, Roundtable on Value & Science-
Driven Health Care

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Abbreviations and Acronyms

ACA

Patient Protection and Affordable Care Act (2010)

ACGME

Accreditation Council for Graduate Medical Education

AF4Q

Aligning Forces for Quality

AHRQ

Agency for Healthcare Research and Quality

AMA

American Medical Association

AMIA

American Medical Informatics Association

ARRA

American Reinvestment and Recovery Act (2009)

CCCP

Connected Cardiac Care Program

CER

comparative effectiveness research

CMS

Centers for Medicare & Medicaid Services

CNVs

copy number variants

CRM

crew resource management

CRS

Care Records Service (UK)

DHMC

Dartmouth Hitchcock Medical Center

EGAPP

Evaluation of Genomic Applications in Practice and Prevention

EHR

electronic health record

eMERGE

electronic MEdical Records and GEnomics

EMR

electronic medical record

FCC

Federal Coordinating Council

FDA

Food and Drug Administration

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GDP

gross domestic product

GEDDI

Genetics for Early Disease Detection and Intervention to Improve Health Outcomes

GHP

Geisinger Health Plan

GHS

Geisinger Health System

GWAS

genome-wide association study

HCC

Hierarchical Condition Categories

HEDIS

Healthcare Effectiveness Data and Information Set

HHS

Department of Health and Human Services

HIPAA

Health Insurance Portability and Accountability Act

HIT

health information technology

HITECH

Health Information Technology for Economic and Clinical Health Act (2009)

HPV

human papillomavirus

IHI

Institute for Healthcare Improvement

INR

International Normalized Ratio

IOM

Institute of Medicine

IPADS

International Patient Decision Aids Standards

IRB

institutional review board

IT

information technology

JAMA

Journal of the American Medical Association

MA

Medicare Advantage

NBCC

National Breast Cancer Coalition

NCI

National Cancer Institute

NHS (UK)

National Health Service

NIH

National Institutes of Health

NWHIN

Nationwide Health Information Network

OECD

Organisation for Economic Co-operation and Development

OMB

Office of Management and Budget

ONC

Office of the National Coordinator for Health Information Technology

PAMF

Palo Alto Medical Foundation

PCMH

patient-centered medical home

PCORI

Patient-Centered Outcomes Research Institute

PheWAS

phenome-wide scanning

PHR

personal health record

Suggested Citation:"Front Matter." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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PSA

prostate-specific antigen

PXE

pseudoxanthoma elasticum

RCT

randomized controlled trial

REP

Rochester Epidemiology Project

RPIWs

Rapid process improvement workshops

RWJF

Robert Wood Johnson Foundation

SCP

shared care plan

SHARP

Strategic Health IT Advanced Research Projects

SNP

single nucleotide polymorphism

SORT

Strength of Recommendation Taxonomy

SR

systematic review

SSRI

selective serotonin reuptake inhibitor

STEPPS

Strategies and Tools to Enhance Performance and Patient Safety

USPSTF

U.S. Preventive Services Task Force

VAP

ventilator-associated pneumonia

VMMC

Virginia Mason Medical Center

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As past, current, or future patients, the public should be the health care system's unwavering focus and serve as change agents in its care. Taking this into account, the quality of health care should be judged not only by whether clinical decisions are informed by the best available scientific evidence, but also by whether care is tailored to a patient's individual needs and perspectives. However, too often it is provider preference and convenience, rather than those of the patient, that drive what care is delivered. As part of its Learning Health System series of workshops, the Roundtable on Value & Science-Driven Health Care hosted a workshop to assess the prospects for improving health and lowering costs by advancing patient involvement in the elements of a learning health system.

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