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1
The Learning Health System
INTRODUCTION AND CONTEXT
The prosperity of a nation is tied fundamentally to the health and well-
being of its citizens. It follows, then, that citizens—each one a past, current,
or future patient—should represent both the healthcare system’s unwaver-
ing focus, and its fully engaged agents for change. This precept has several
major implications. It means that the quality of health care should not be
judged solely by whether clinical decisions are informed by the best available
scientific evidence, but also by whether care accounts for a patient’s personal
circumstances and preferences. It implies that careful listening should be the
starting point for every patient encounter. And it suggests that the success
of and innovations in healthcare delivery should depend on direct consumer
engagement in the design of healthcare models and their aims.
One of the central lessons of the Institute of Medicine (IOM) report
Crossing the Quality Chasm: A New Health System for the 21st Century
is that much of health care in the United States has lost its focus on the
patient (IOM, 2001). Instead, the healthcare system has been designed
and motivated primarily by the perspectives of its component facilities,
companies, payers, and providers. Crossing the Quality Chasm urges that
care be refocused around six aims: care should be safe, effective, patient-
centered, timely, efficient, and equitable. In the decade since the report was
published, it has become even clearer that citizen and patient engagement
is central to taking advantage of advances in the personalization of care
based on genetics, preferences, and circumstances. Meeting this challenge
is the core goal of what the Institute of Medicine’s (IOM’s) Roundtable on
33
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34 PATIENTS CHARTING THE COURSE
Value & Science-Driven Health Care has termed a learning health system.
Central to such a system is the notion that advances in biological research,
clinical medicine, and information technology provide powerful tools for
health improvement if applied within a system that promotes the mutually
dependent aims of science, value, and patient-centered care (IOM, 2007,
2010b, 2010c, 2011a, 2011b).
Currently, health care in the United States falls substantially short of
what should be possible given the nation’s substantial healthcare invest-
ment. At $2.5 trillion, $7,500 a person, and 17 percent of gross domestic
product in 2009, that investment totaled twice the expenditure levels of
other industrial countries, yet the United States consistently rates poorly
(currently 37th) on overall health system performance and on key compo-
nent measures such as infant mortality (39th) and life expectancy (36th)
(IOM, 2010a; Murray and Frenk, 2010). Although the overall quality of
care in the United States compared with other developed nations varies by
condition—for example, the United States is a leader in cancer care but
lags behind other nations in asthma and hip fracture mortality—perhaps
the most compelling illustration of system shortfalls is found in the wide
variation in the quality of care from state to state and practice to practice.
It is not unusual to see several-fold differences in care intensity and costs,
with no effect on outcomes (Docteur and Berenson, 2009; Fisher et al.,
2003; OECD, 2009). This geographic variation in quality of care has been
shown to extend to cities in the same state and hospitals in the same city.
The systematic barriers to effective and efficient healthcare decisions
have contributed to the development of a system that, by some estimates,
delivers recommended care less than half of the time and often lacks defini-
tive research evidence to guide clinical practice (IOM, 2008, 2009). Across
the United States, however, many organizations deliver high-value care,
and collectively, these organizations illustrate the many missed opportuni-
ties for healthcare improvement, such as system fragmentation, a lack of
infrastructure and healthcare culture to support learning and continuous
improvement, and incentives that reward care volume over value.
Perhaps the greatest missed opportunity for creating a health system
that delivers the right care to the right patient at the right time is the failure
to fully engage patients and the public as active partners in advancing the
delivery of care that works best for the circumstances and ensuring that
the care delivered is of value. Despite the potential to achieve this engage-
ment, evidence suggests that such efforts are limited at both the health
systems level, where provider preferences and supply often shape the care
delivered, as well as at the level of individual healthcare decisions (Berwick,
2009; Sepucha and Barry, 2009; Zikmund-Fisher et al., 2010).
In part, this shortfall is a communication problem with respect to
public awareness as well as encouragement and support by the healthcare
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THE LEARNING HEALTH SYSTEM
system. Patients may express frustration with their care because they do not
feel they have adequate input into the clinical decision-making process or
that the decisions made reflect their preferences. Currently, however, more
than two-thirds of U.S. consumers believe their personal care is “evidence-
based”—derived from the best available science and appropriately targeted
to individual patient needs—and consistently of high quality (Campaign
for Effective Patient Care, 2009). Increased public awareness of and ap-
preciation for current shortfalls in health care and the role patients and the
public can play in effecting needed improvements are essential for progress
(Carman et al., 2010).
THE ROUNDTABLE AND THE
LEARNING HEALTH SYSTEM SERIES
Since 2006, the Roundtable has provided a venue for health leaders
from various stakeholder sectors—health professionals, patients, health
system leaders, insurers, employers, manufacturers, information technol-
ogy, research—to work cooperatively to address their common interest
in improving the effectiveness and efficiency of health care. Roundtable
members have set the goal that, by 2020, 90 percent of clinical decisions
will be supported by accurate, timely, and up-to-date information and will
reflect the best available evidence. Over the past 5 years, the Roundtable’s
Learning Health System series of workshops has identified and considered
the key elements whose transformation can be central to achieving this goal:
clinical research, clinical data, information technology, evidence standards,
healthcare tools, caregiver culture, patient engagement, and financial incen-
tives. For each of these elements, the workshops have explored priorities
and approaches integral to harnessing interests and expertise across health-
care sectors to drive improvements in the value of medical care delivered in
the United States. The following publications summarizing these workshops
offer perspectives on the issues involved, and identify priorities and projects
in need of cooperative stakeholder engagement:
• The Learning Healthcare System (2007)
• Evidence-Based Medicine and the Changing Nature of Health Care
(2008)
• Leadership Commitments to Improve Value in Health Care: Finding
Common Ground (2009)
• Value in Health Care: Accounting for Cost, Quality, Safety, Out-
comes, and Innovation (2010)
• Redesigning the Clinical Effectiveness Research Paradigm: Innova-
tion and Evidence-Based Approaches (2010)
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36 PATIENTS CHARTING THE COURSE
• Clinical Data as the Basic Staple of Health Learning: Creating and
Protecting a Public Good (2011)
• The Healthcare Imperative: Lowering Costs and Improving Out-
comes (2011)
• Engineering a Learning Healthcare System: A Look at the Future
(2011)
• Learning What Works: Infrastructure Required for Comparative
Effectiveness Research (2011)
• Digital Infrastructure for the Learning Health System: The Founda-
tion for Continuous Improvement in Health and Health Care (2011)
In addition to the meeting series focused on exploring concepts and
strategies for the learning health system, the Roundtable operates a series
of Innovation Collaboratives, aimed at stewarding joint projects among
organizations key to field advancement.
Across the range of issues engaged in the Learning Health System
workshops and the Innovation Collaboratives, greater public interest and
patient engagement have emerged as essential and potentially transforma-
tive elements for driving health system change. Empowering and supporting
the public in these new roles requires the creation of a healthcare culture
that supports continuous improvement and learning; elicits and considers
public perspectives on key healthcare issues; and better characterizes needed
partnerships, resources, tools, and communication approaches. Listed in
the front of this publication are members of the IOM planning committee1
charged with guiding the development of a workshop to consider these
issues in detail. The committee worked with IOM staff to develop the work-
shop objectives and emphases and to plan the agenda. Box 1-1 summarizes
the motivating issues and objectives for the workshop.
The planning committee designed day 1 of the workshop to focus on
key elements of progress in science-driven health care—care culture, clinical
research and the evidence process, clinical data, health information tech-
nology systems—with specific attention to the role of patient engagement
in the success of each. Day 2 was devoted to understanding opportuni-
ties to develop the communications, culture, and incentives that will help
in reorienting the focus and performance of a value- and science-driven
health system. The workshop agenda is provided in Appendix A, speaker
biographical sketches in Appendix B, a listing of workshop participants in
Appendix C, and an overview of common themes from each workshop in
the Learning Health System series in Appendix D. This publication summa-
1 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.
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THE LEARNING HEALTH SYSTEM
BOX 1-1
Motivating Issues and Objectives
Motivating Issues
• mplications of knowledge advances. Progress in medical science, basic re-
I
search, information technology, and operations research offers the potential for
immediate, continuous, and transformative improvement in health care. In the
context of increasing understanding of the importance of individual factors to
patient outcomes, reaching health care’s full potential requires a reorientation
to the patient.
• erformance shortfalls. In terms of both effectiveness and efficiency, the nation’s
P
healthcare system is underperforming. The United States has the highest per
capita health expenditures—twice the average for other developed countries—
yet consistently rates no better than the middle tier of developed nations on
such key indicators as infant mortality, life expectancy, and overall health system
performance.
• isconnects in core aims. The core aim of health care is improved outcomes:
D
to maintain or enhance patient status with respect to disease, injury, functional
status, and sense of well-being. Yet often the system’s dominant characteristics
are oriented more to clinician preferences or interests and economic rewards
for volume over value.
• nchor misalignment. The primary focus of care should be on outcomes rather
A
than service volume and on the interdependent aims of patient-centeredness,
better science, better value, and continuous improvement.
• mperative to make patients a central element. Efforts of the IOM and others
I
have underscored the necessity of making patient perspectives, preferences,
and needs a strong, central focus of a learning health system, for several
reasons, including: the basic fact that patients are the health system’s key
focus and its agents for change; the fact that care has been shown to be
more effective and efficient with more patient involvement; and the growth of
preference-sensitive care as new interventions are developed.
• mportance of communication. Central to progress are the communication
I
strategies necessary to inform and engage the public and patient communities
as understanding advocates, partners, and change agents.
Objectives
• dentify the state of play with respect to the foundational elements of a learning
I
health system, the role of patients and the public in achieving progress on each
element, and the most important priorities and policy levers for accelerating
progress.
• xplore and clarify the integral links among three key desired characteristics
E
of care: science-driven, patient-centered, and value-enhancing.
• iscuss communication and public engagement strategies important to im-
D
proving the awareness and patient-focused action necessary for the transition
to a learning health system.
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38 PATIENTS CHARTING THE COURSE
rizes the workshop presentations and discussions and the issues addressed.
Summaries of common themes and of the workshop presentations and
discussions are provided below; further detail is provided in the main text.
This chapter provides contextual information for that discussion, in-
cluding an overview of opportunities presented by the recent healthcare
reform legislation and a summary of the keynote remarks of Harvey V.
Fineberg, president of the Institute of Medicine, to help set the stage for the
workshop. The remainder of this volume contains speaker-authored papers
presented at the workshop in the areas of clinical research, patient care,
and learning that is real-time and continuous (Chapter 2); clinical data as
a public good for discovery (Chapter 3); engaging patients to improve sci-
ence and value in a learning health system (Chapter 4); health information
technology as the engine for learning (Chapter 5); patients, clinical deci-
sions, and health management in the information age (Chapter 6); applying
evidence for patient-centered care: standards and expectations (Chapter 7);
team-based care and the learning culture (Chapter 8); and incentives aligned
with value and learning (Chapter 9).
HEALTHCARE REFORM AND A LEARNING HEALTH SYSTEM
Many of the basic aims of the American Recovery and Reinvestment
Act of 2009 (ARRA) and the Patient Protection and Affordable Care Act of
2010 (ACA) reflect key features of the Roundtable’s vision for health care.
These features are focused on better harnessing technology and innovation—
by advancing information networks and research methodologies—as well
as the expertise and resources of all healthcare stakeholders to promote
greater coordination, communication, transparency, and accountability in
health care.
A learning health system is one that maintains a constant focus on im-
proving the value of the return on the nation’s healthcare investment. Emerg-
ing from the Roundtable’s work on reducing healthcare costs and improving
outcomes and on advancing the infrastructure required for comparative
effectiveness research (CER) are many immediate opportunities to improve
the overall value of health care delivered (IOM, 2010c, 2011b). Echoing this
work are efforts targeting the reduction of unnecessary services, waste, and
other system inefficiencies; the alignment of incentives to reward care value
rather than volume; and establishment of a means for continuous measure-
ment, tracking, and improvement of the effectiveness and efficiency of the
healthcare system. Reflecting the interdependence between controlling costs
and providing coverage that ensures timely and appropriate care to all, the
ACA also significantly expands health insurance coverage.
A focus on the development and application of evidence on what
works best for whom is fundamental to understanding and ensuring the
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THE LEARNING HEALTH SYSTEM
value of health care delivered. Funds provided as part of the ARRA rep-
resent an important initial investment in several components of a learning
health system, including $19 billion allocated for improved deployment
and application of electronic health records (EHRs) and $1.1 billion for
expanded capacity for CER, which encompasses funding for the conduct
of such research and the development of key infrastructure elements such
as databases and other clinical data resources. Efficient use of these new
resources for quality improvement and evidence development is contingent
upon recognition of their qualities as a public good and assessment of issues
related to ownership, availability, and use of clinical data as a public utility
for real-time clinical insights.
Underscoring the importance of developing the point of care as a
knowledge engine, provisions in the ACA also target healthcare delivery
systems as a vehicle for driving improvements in system performance and
efficiency. Building the capacity to learn as a natural outgrowth of clini-
cal care will foster a health system that continually improves the quality
of health care delivered. Furthermore, developing capacity to measure
and track quality and efficiency will not only improve transparency and
accountability in health care, but also lay the foundation for building in-
novative clinical effectiveness research into practice to improve the speed
and relevance of evidence development.
The fragmented nature of the U.S. health system compounds the chal-
lenge of healthcare delivery but at the same time creates system-wide oppor-
tunities for innovation and improvement. Healthcare reform provisions
such as the Innovation Center at the Centers for Medicare & Medicaid
Services (CMS) aim at accelerating sharing and dissemination of this learn-
ing across the system and supporting greater efficiency and effectiveness
in the delivery of high-quality health care by fostering greater synchrony,
consistency, and coordination in the development, interpretation, and ap-
plication of clinical evidence.
In addition to these healthcare reform provisions, a trusted scientific
intermediary could help both broker the perspectives of different parties
and ensure that leadership stems from every sector. Strong, visible, and
multifaceted leadership from all involved sectors will be essential to marshal
the vision, nurture the strategy, and motivate the actions necessary to create
a learning health system.
CREATING A LEARNING CULTURE
The passage of the ARRA and ACA does not guarantee dramatic gains
in the efficiency or effectiveness of medical care. Careful implementation of
the legislation will be necessary to better orient health care toward science
and value, and reform will be ongoing and constantly evolving. Sustain-
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40 PATIENTS CHARTING THE COURSE
ing these efforts will require the creation of a learning culture that fosters
continuous learning, improvement, and innovation.
Fundamental to a learning culture is the full engagement of patients and
the public. The Roundtable envisions learning in health care as a partner-
ship in which the patient is central to ensuring improved health and the
delivery of appropriate care, and the public is engaged in the evidence pro-
cess. Supporting patients and the public in these roles will require improved
communications between patients and health professionals about the nature
of the evidence base and its use and strengthening of the patient–provider
relationship.
Many workshop participants stressed that such a culture will require
not only outreach to patients and the public, but also adoption in full of
patient-centered care across health sectors and stakeholders. Although iden-
tified nearly 10 years ago by the IOM as a key dimension of quality, patient-
centered care still feels unfamiliar, even disruptive, to many stakeholders
(Berwick, 2009; IOM, 2001). Ultimately, value and science-driven health
care comes from a sustained, system-wide focus on fostering a health-care
culture and activities that reflect the interests, values, and priorities of pa-
tients and the public. Attention is needed to the identification and develop-
ment of opportunities, across health system activities, to better elicit and
act on patient and public perspectives and input.
THE LEARNING HEALTH SYSTEM IN 2010 AND TO COME
Harvey V. Fineberg, M.D., Ph.D.
Institute of Medicine
The U.S. healthcare system is vast, complicated, and multifaceted. Un-
like many other countries, the United States has several alternative health-
care models across the nation, each with its own niche. While some systems
differ in their financial infrastructure, designed as either integrated, prepaid,
or privately insured, others specialize in innovation, incentive schemes, or
primary care and other specialties. For example, the Veterans Health Ad-
ministration, an integrated, prepaid, wholly central system, differs largely
from privatized health coverage programs such as health maintenance or
preferred provider organizations, yet both are successful in their own light.
Thus, the U.S. healthcare system currently is characterized by pockets of
innovation and demonstrated success. These successes, however, are swim-
ming in a sea of chaos and lack of achievement. Aspects of our current
healthcare system are not working well and must be addressed.
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THE LEARNING HEALTH SYSTEM
Flaws of the Current Healthcare System
Healthcare spending in the United States surpasses that in most other
countries, yet the nation’s patient care outcomes fall well below those of
most other Organisation for Economic Co-operation and Development
(OECD) countries. A comparison of life expectancy and health spending
per capita across different countries illustrates that the United States is
an outlier along these two dimensions, spending by far the most and yet
achieving less than many other countries (see Figure 1-1). Despite monetary
investments amounting to 17 percent of the nation’s gross domestic prod-
uct, the United States ranks among the lowest in life expectancy and highest
in infant mortality rate, and has poor system performance. Moreover, it
has been estimated that about one-third of healthcare expenditures do not
improve patient outcomes (McGlynn et al., 2003; OECD, 2009; Truffer et
Life expectancy in years
84
JPN
ISL
82 CHE
AUS
ITA
FRA
ESP
CAN
SUE NOR
NZL DEU NLD
80 FIN
KOR LUX
IRL
PRT
USA
AUT
GRC GBR
78 BEL
DNK
CZE
76
POL
MEX
R² = 0.55
SVK
74
HUN
TUR
72
0 2000 4000 6000 8000
Health spending per capita (USD PPP)
FIGURE 1-1 Healthcare outcomes in the United States compared with other coun-
tries. The graph shows life expectancy at birth in different countries versus per
Figure 1-1.eps
capita expenditures on health care in dollar terms, adjusted for purchasing power.
The United States is a clear outlier on the curve, spending far more than any other
country yet achieving less.
SOURCE: OECD, 2009.
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42 PATIENTS CHARTING THE COURSE
al., 2010). With $2.5 trillion spent in 2009 on health care, the United States
sees a low return on a high investment.
Still, addressing healthcare expenditures is only one facet of the larger
issue of healthcare reform. Classic problems of overuse, underuse, and
misuse of interventions still exist as critical challenges for U.S. health
care—challenges that will not disappear with the adoption of universal
healthcare coverage. Similarly, universal healthcare coverage will not be
possible unless these critical issues of health spending and intervention
variabilities are addressed. U.S. health care must address both of these
concerns in conjunction to ensure that people are receiving care and the
system is getting the right care to the people who need it. The systems
perspective of a learning health system is therefore the first step toward
achieving this high level of care.
A Comprehensive, Systematic Focus
Learning in health care does not apply solely to the practicing physi-
cian or professional. Although formal training and education are vital
components of learning in health care, a systems perspective encompasses
a number of different foci and catalyzes learning among all healthcare
stakeholders. The system involves individual interventions and constituents,
thus placing focus on what providers can do for their patients. However,
it also encompasses the performance of individuals and organizations,
the role of patients in everything from health literacy to participation in
decision making, and the engagement of technologies such that equipment
and information systems deliver better services. We must consider these
individual components holistically to comprehend what it means for the
healthcare system to be operating at a higher level; a level characterized by
better outcomes, better value, and better ability to address patient needs.
Five key tools will be instrumental in achieving this level of performance:
Health information technology, electronic medical records, and
•
integrated systems that involve both patient management and the
ability to learn can engage patients and help make them active
participants in their own care.
New research and innovation in diagnosis and treatment can in-
•
crease the scope of what healthcare providers can do for their
patients and the ways in which they can provide those services.
Insights in genetics are enabling the move into an era of personal-
•
ized medicine, wherein patients have access to information that is
relevant to them as individuals. This knowledge can be a powerful
tool, encouraging patients to fundamentally alter their lifestyles
and take charge of their own health.
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THE LEARNING HEALTH SYSTEM
Innovative care delivery approaches go beyond individual tech-
•
nologies and place the emphasis on systems of care delivery and a
holistic perspective.
Public engagement is a root source of progress and a critical tool
•
in achieving a learning system.
A Vision of a Learning Health System
The charter of the Roundtable on Value & Science-Driven Health Care
describes a learning health system as a system designed to generate and ap-
ply the best evidence for collaborative healthcare choices for 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. In working toward this vision, discussions in previous efforts of the
Roundtable and, more generally, the IOM have identified key features of a
learning health system (Box 1-2).
Together, these characteristics allude to a virtuous cycle in which all
healthcare stakeholders deliver established best practices and learn how
to improve from the care delivered. This cycle ensures that learning can
be perpetuated and that effective, quality care is delivered. The clinician
is both the steward of information and the agent acting on behalf of
the patient, but decision making and action are centered on the patient’s
needs. Furthermore, it is not enough to be able to provide best practices; a
learning health system must ensure that best practices are provided every
time, all the time. These elements should all be embedded in a system that
feeds back information and action in a seamless way, a system that regards
knowledge and data as a public trust, respecting privacy yet acting in the
public interest. Information technology is a clear foundation for the engine
of a knowledge-driven system. Health care must depend on individuals
who can be trusted without conflict to provide science-based advice and act
for the well-being of the people they serve. Finally, all these parts must be
brought together in a network that requires not only good leadership but
also good followership, as individuals recognize and quickly adopt proven
methods that work elsewhere. In realizing a learning health system, each
of these elements must be embedded in an integrated model that provides
relevant, real-time results to enable more effective care, encourage partici-
patory and science-based decision making, and foster continuous learning
for all healthcare stakeholders.
Moving Forward
In actuating this vision of a learning health system, value, science, and
policy will be the fundamental driving forces. Value, or performance at
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44 PATIENTS CHARTING THE COURSE
BOX 1-2
Learning Health System Characteristics
Culture: participatory, team-based, transparent, improving
Design and processes: patient-anchored and tested
Patients and public: fully and actively engaged
Decisions: informed, facilitated, shared, and coordinated
Care: starting with best practice, every time
Outcomes and costs: transparent and constantly assessed
Knowledge: ongoing, seamless product of services and research
Health information: a reliable, secure, and reusable resource
The data utility: data stewarded and used for the common good
Digital technology: the engine for continuous improvement
Trust fabric: strong, protected, and actively nurtured
Leadership: multi-focal, networked, and dynamic
SOURCE: Adapted from The Learning Healthcare System (IOM, 2007).
cost, denotes what is gained per dollar spent. Science generates evidence
that informs and shapes care delivery, and policy encompasses the choices
individuals make that define the rules of the game. Together, these three
drivers make a holistic, systematic perspective on health care possible.
Current policy efforts are aimed at helping to bring a learning health
system into practice. Just seven days before this workshop was held, Presi-
dent Barack Obama signed the ACA. The legislation not only created a new
independent payment advisory board, but also established the Innovation
Center at CMS and the Patient-Centered Outcomes Research Institute
(PCORI). As a center dedicated to testing innovative payment and pro-
gram service delivery methods, the Innovation Center has the potential to
reduce Medicare and Medicaid costs substantially while enhancing health
care quality. With a health system populated by countless alternative care
delivery models, the United States can benefit immensely from the Center’s
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THE LEARNING HEALTH SYSTEM
testing of the feasibility, cost-effectiveness, and quality outcomes of differ-
ent models. PCORI, another key provision of the ACA, has as its goal to
advance the quality and relevance of evidence concerning medical condi-
tions and ailments; this goal parallels a learning health system’s pursuit of
evidence-based care and focus on value and quality. In establishing both
of these centers, the healthcare reform legislation helps align provider
incentives with patient-centered value and spurs the development of an
integrated learning health system.
Furthermore, the ARRA will accelerate the adoption of health informa-
tion technology and expand comparative CER through increased invest-
ment. The official establishment of the Office of the National Coordinator
for Health Information Technology and the Federal Coordinating Council
for Comparative Effectiveness Research has proven instrumental in foster-
ing the adoption of electronic health records and the assessment of research
on health care treatments and strategies, respectively.
Setting the Agenda
Moving forward with a learning health system will require identify-
ing, understanding, and assessing both challenges and opportunities. These
workshop sessions illustrate how to move forward on key elements such
as science, patients, and value, as well as the communication and patient
engagement that are so critical to success. In highlighting programs cur-
rently under way and discussing information technology as the engine for
an integrated system, these sessions explore the next steps that will lead to
the development of a learning health system.
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