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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
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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 Govern-
ing Board of the National Research Council, whose members are drawn from the
councils of the National Academy of Sciences, the National Academy of Engineer-
ing, 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 Founda-
tion, 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 Insti-
tutes 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 publica-
tion are those of the author(s) and do not necessarily reflect the view of the organi-
zations or agencies that provided support for this project.
International Standard Book Number-13: 0-978-0-309-14993-8
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For more information about the Institute of Medicine, visit the IOM home page
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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. Washing-
ton, DC: The National Academies Press.
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“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
— Goethe
Advising the Nation. Improving Health.
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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 Acad-
emy 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 en-
gineers. 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 engineer-
ing programs aimed at meeting national needs, encourages education and research,
and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi-
dent 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 Insti-
tute 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
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Fineberg is president of the Institute of Medicine.
The National Research Council was organized by the National Academy of Sci-
ences 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 Coun-
cil 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
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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.
v
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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 work-
shop, identifying topics, and choosing speakers. The responsibility for the published workshop
summary rests with the workshop rapporteurs and the institution.
vi
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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)
vii
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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 respon-
sible 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.
ix
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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 effec-
tiveness 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 effec-
tiveness 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 perfor-
mance, 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-
x
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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 evi-
dence 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 interven-
tions, better use of the patient care experience to generate evidence on effec-
tiveness, 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 activi-
ties, we define evidence-based medicine broadly to mean that, to the great-
est 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 appro-
priate 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 estab-
lishment of healthcare data as a public good; shared responsibility distrib-
uted 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.
xi
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xvi PREFACE
the involvement and support of senior leadership from key healthcare stake-
holders. 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 stake-
holder 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 discus-
sions, 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 ele-
ments 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, commis-
sioned 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 to-
ward 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 Commit-
tee, 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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xvii
PREFACE
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 coordinat-
ing 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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Contents
Abbreviations and Acronyms xxiii
Synopsis and Overview 1
1 The Learning Health System 33
Introduction and Context, 33
The Roundtable and the Learning Health System Series, 35
Healthcare Reform and a Learning Health System, 38
Creating a Learning Culture, 39
The Learning Health System in 2010 and to Come, 40
Harvey V. Fineberg
2 Clinical Research, Patient Care, and Learning That Is
Real-Time and Continuous 47
Introduction, 47
Comparative Effectiveness Research: Patient, Clinician, and
Policy Needs, 48
Patrick Conway
Health Systems as Research Platforms: Enhancing Science,
Value, and Innovation, 52
John Noseworthy and Sherine Gabriel
Enhancing the Culture of Patient Contributions to Learning
in Health Care, 59
Diane Simmons and Kenneth Getz
xix
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xx CONTENTS
3 Clinical Data as a Public Good for Discovery 69
Introduction, 69
Information Needs for a Learning Health System, 70
Farzad Mostashari
Opening Access to High-Value Data Sets, 74
Todd Park
Ensuring Data Integrity: Adressing Privacy Protection and
Proprietary Concerns, 87
Don E. Detmer
4 Engaging Patients to Improve Science and
Value in a Learning Health System 95
Introduction, 95
Investing Patients in the Research and Continuous Improvement
Enterprise, 96
Sharon F. Terry
Public and Patient Strategies to Improve Health System
Performance, 103
James B. Conway
Communicating with Patients About Their Concerns, Expectations,
and Preferences, 110
Karen Sepucha
5 Health Information Technology as the Engine for Learning 119
Introduction, 119
The Meaningful Use of Health Information Technology, 120
David Blumenthal
New Classes of Data, New Opportunities to Learn, 123
Daniel R. Masys, Jack M. Starmer, and Jill M. Pulley
Web 2.0 and Patient Engagement, 128
Kamal Jethwani and Joseph C. Kvedar
6 Patients, Clinical Decisions, and Health Information
Management in the Information Age 137
Introduction, 137
Public and Patient Information Access and Use as a Core Care
Component, 138
George D. Lundberg
Health Information Technology–Based Approaches to Health
Management, 145
Paul C. Tang
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xxi
CONTENTS
Health and Disease Management Outside the Clinic Doors:
There’s an App for That!, 149
Doriane C. Miller
7 Applying Evidence for Patient-Centered Care: Standards and
Expectations 159
Introduction, 159
The Role of Evidence in Patient-Centered Care, 160
Dale Collins Vidal
Evidence Standards and Application: Right Care, Right Patient,
Right Time, 167
Clifford Goodman
Translation and Communication Needs for Care in the Face of
Uncertain Evidence, 177
Fran M. Visco
8 Team-Based Care and the Learning Culture 187
Introduction, 187
Practical Experience with Collaborative Models in the Health
Professions, 188
Allan S. Frankel and Michael Leonard
Measures and Strategies for Clinical Excellence and Continuous
Improvement, 196
Joyce Lammert
Care Cooperation and Continuity Across Clinicians, Facilities,
and Systems, 202
Alice Bonner, Craig Schneider, and Joel S. Weissman
9 Incentives Aligned with Value and Learning 213
Introduction, 213
Paying for Value and Science-Driven Care, 214
Michael E. Chernew
Generating Evidence to Guide Care, 219
Richard Gilfillan
Creating a Learning Culture, 228
Anne F. Weiss and Bianca M. Freda
10 Common Themes and Opportunities for Action 235
Introduction, 235
Common Themes, 235
Strategies for Moving Forward, 239
Looking Ahead to Next Steps, 242
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xxii CONTENTS
Appendixes
A Workshop Agenda 247
B Biographical Sketches of Workshop Participants 253
C Workshop Attendee List 273
D The Learning Health System Series: Workshop Common
Themes 283
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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
xxiii
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xxiv ABBREVIATIONS AND ACRONYMS
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
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xxv
ABBREVIATIONS AND ACRONYMS
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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