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Synopsis and Overview
INTRODUCTION AND OVERVIEW
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
unwavering 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. Building off the Chasm
1
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2 PATIENTS CHARTING THE COURSE
report, a learning health system requires that patients help chart the course
and operation of the learning process.
In this context, the IOM, under the auspices of the Roundtable on Value
& Science-Driven Health Care, focused the tenth workshop in its Learn-
ing Health System series on public and patient engagement and leadership.
This volume, Patients Charting the Course: Citizen Engagement and the
Learning Health System, presents a summary of the issues and perspectives
addressed at that meeting.
As discussed by many participants in the meeting, most health systems
today are not centered on patients. Instead, volume drives service; supply
influences demand; and clinician—not patient—preferences shape practice
(Wennberg et al., 2007). The notion of patient-centeredness often still feels
unfamiliar, even disruptive, for many of those unexposed to the advantages
of such a culture (Berwick, 2009).
Patients have shown an interest in becoming more involved and learning
more about their conditions. A Pew Research Center Survey found that 61
percent of adults go online to seek information on specific diseases, medical
treatments, and other health subjects. Although the increased availability
of health information is important, new communication approaches are
needed to provide information that is reliable, relevant, and understandable
so patients can make informed healthcare decisions.
Data and information are a first step toward improving communica-
tions between providers and patients. Providers will increasingly need to
discuss with patients the risks and benefits of competing treatment op-
tions and engage patients in shared decision making about their treatment
choices. This represents a shift away from the historical model of medicine
toward one in which physicians and patients work together to manage
complex conditions, and make decisions on the basis not only of the best
medical knowledge, but also the patient’s life circumstances, preferences,
and personal biology.
Recent legislative efforts and national interest around these issues have
provided an important impetus for progress and prompted a reassessment
of priorities and the articulation of practical next steps for developing a
learning health system. The American Recovery and Reinvestment Act
of 2009 (ARRA) included more than $1.1 billion to enhance the nation’s
capacity for comparative effectiveness research and nearly $20 billion for
the adoption and use of health information technology through the Health
Information Technology for Economic and Clinical Health (HITECH) Act.
Through incentives for the meaningful use of electronic medical records, the
HITECH Act will encourage the adoption of electronic medical records by
clinician practices and hospitals, which will enable improved access to clini-
cal information, coordination of care across multiple healthcare settings,
and a comprehensive record of a patient’s medical history. This will provide
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3
SYNOPSIS AND OVERVIEW
the foundation for many aspects of the learning health system, including
expanded clinical data for research, patient access to their own health infor-
mation, and new models of care outside the traditional clinical encounter.
Signed into law one week before the workshop, the Patient Protection
and Affordable Care Act of 2010 (ACA) underscored the importance of
patient choice and engagement, including provisions to promote choice,
accountability, consideration of patient preferences, and shared healthcare
decision making. As this law is implemented, new opportunities will be-
come available for establishing innovative models to deliver care, creating
incentives to coordinate and improve care quality and value, and expanding
the clinical workforce.
THE ROUNDTABLE AND THE
LEARNING HEALTH SYSTEM SERIES
The IOM Roundtable on Value & Science-Driven Health Care has
since 2006,- provided a venue for health leaders from various stakeholder
sectors—health professionals, patients, health system leaders, insurers, em-
ployers, manufacturers, information technology, research—to work coop-
eratively to address their common interest in improving the effectiveness
and efficiency of health care. The Roundtable members have set the goal
that, by 2020, 90 percent of clinical decisions will be supported by accu-
rate, timely, and up-to-date information and will reflect the best available
evidence. Over the past five 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 incentives. For each
of these elements, the workshops have explored priorities and approaches
integral to harnessing interests and expertise across healthcare sectors to
drive improvements in the value of medical care delivered in the United
States. The following publications summarizing these workshops offer per-
spectives 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)
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4 PATIENTS CHARTING THE COURSE
• Redesigning the Clinical Effectiveness Research Paradigm: Innova-
tion and Evidence-Based Approaches (2010)
• 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 Foun-
dation 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 S-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
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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5
SYNOPSIS AND OVERVIEW
BOX S-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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6 PATIENTS CHARTING THE COURSE
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-
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.
COMMON THEMES
Representatives from the multiple healthcare sectors represented on
the Roundtable participated in the workshop discussions. Although the
perspectives brought to bear were diverse, the presentations and discus-
sions shared a focus on the issues and challenges involved in moving to care
centered on patients and their families, as envisioned by the Quality Chasm
report. As noted by one workshop participant, such a focus means that “it
is not about my condition—it’s about me.” During the workshop, a number
of common themes emerged as participants discussed the importance of a
patient-focused culture in addition to the content, structure, and function-
ing of a patient-centered, learning health system. These themes are listed in
Box S-2 and discussed in detail below.
Listening. Each patient-clinician interaction starts with uninterrupted atten-
tion to the patient’s voice on issues, perspectives, goals, and preferences.
These patient views should then be used to guide clinical decisions, which
often involve choices among multiple treatments that have both benefits
and risks. Workshop participants reported that care often improved when
staff and providers listened carefully to the concerns of patients and their
families. Yet, it has been noted that physicians tend to interrupt patients
within about 15 seconds of beginning to speak at the outset of the visit. On
the other hand, an uninterrupted patient tends to conclude their remarks in
under a minute (Beckman and Frankel, 1984). Listening fully to the patient,
then, does not cause any significant delays in the physician’s schedule, and
adds substantially to creating an environment where patients feel comfort-
able sharing their health information. Achieving this goal will require a
new focus on patient communication starting early in provider education
to ensure that providers have the tools they need to share complex health
information with patients and help them with these decisions.
Participatory. Health outcomes improve when patients are engaged in their
own care. In addition to improving health outcomes and patient adherence,
participants noted that engagement can increase employee satisfaction and
financial performance. People are eager to play a strong role in their own
health care when given the right tools, as evidenced by the rapid uptake of
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7
SYNOPSIS AND OVERVIEW
BOX S-2
Patient-Anchored Care: Common Themes
• istening. Each patient-clinician interaction starts with uninterrupted attention
L
to the patient’s voice on issues, perspectives, goals, and preferences.
• articipatory. Health outcomes improve when patients are engaged in their
P
own care.
• eliable. All patients should expect proven best practice as the starting point
R
in their care.
• ersonalized. With proven best practice as the starting point, science-based
P
tailoring is informed by personal biological traits, circumstances, and preferences.
• eamless. Care delivered by multiple providers in multiple settings should be
S
fully integrated and seamless.
• fficient. Patients, their families, and clinicians should expect care to be ap-
E
propriate to the need, available resources, and time required.
• ccountable. All relevant aspects of the clinical experience, including patient
A
perspectives, should be captured and routinely assessed against expectations.
• ransparent. Information on the outcomes of care—both effectiveness and
T
efficiency—should be readily accessible and understandable to patients
and their families.
• rustworthy. Patients should expect a strong and secure foundation of trust on
T
all dimensions—safety, quality, security, efficiency, accountability, and equity.
• earning. In a learning health system, the patient is an active contributor to
L
and supporter of the learning process.
Web 2.0 health information applications. Yet as one speaker mentioned,
surveys indicate that only half of patients receive clear information on
the benefits and trade-offs of the treatments under consideration for their
condition. Patients’ involvement may be increased by providing them with
additional information tools for learning about their health, helping them
see the impact of their efforts, and acquainting them with new technologies
with which to monitor their health and assist with lifestyle changes. Public
participation is not limited to the clinic; the workshop highlighted new
initiatives to provide access to health data and allow individuals to create
new applications to improve their health.
Reliable. Each patient should expect proven best practice as the starting
point in their care. The current variability in medical practice impacts pa-
tient care and results in uneven quality and safety for patients. Participants
described tools that minimize this variation, such as dashboard displays
that highlight the interventions that are due, done, or overdue and improve
the consistency of the delivery of interventions to patients; other tech-
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8 PATIENTS CHARTING THE COURSE
nologies that show promise include clinical decision support systems that
present best practices to clinicians. Several participants also noted that, al-
though technologies provide new opportunities, incentives, such as bundled
payments and pay for performance, are needed to promote reliability and
effectiveness in healthcare organizations and ensure accountability.
Personalized. With proven best practices as the starting point, science-based
tailoring is shaped by personal biological traits, genetics, circumstances,
and preferences. Since the sequencing of the human genome was accom-
plished, medical science has sought to personalize treatments to specific
biological traits and genetics, in addition to personalizing care based on
individual patient circumstances and preferences. This effort challenges the
traditional approach of giving the highest priority to evidence gathered by
means of large randomized controlled clinical trials, in which treatments are
measured in a large population with a diverse genetic profile. Using multiple
types of complementary evidence could better guide medical decisions and
account for these personal factors. This new approach focuses on the ap-
plicability of results to the clinic, rather than automatically giving priority
to the results of randomized controlled trials.
Seamless. Care delivered by multiple providers in multiple settings should
be nonetheless expected to be fully integrated and seamless. As patients
move among providers and settings, they often encounter communication
problems, which may result in treatment errors and duplicative services.
Participants described how team-based care offers the potential to rectify
this disconnected care and limit human error. Effective teams are aided by
an appropriate information technology infrastructure, which facilitates
efficient and effective communication of health information. Encouraging
the use of such teams will likely require the use of financial incentives, in-
cluding bundled payments and payments that focus on outcomes; applying
disincentives for poor outcomes, such as for preventable hospital readmis-
sions; and creating incentives for delivery system reforms, including medical
homes and accountable care organizations.
Efficient. Patients, their families, and clinicians should expect care to be
appropriate to need, resources, and time required. Participants under-
scored the fact that currently, much of the care that is delivered is neither
necessary nor efficient, with patients facing increasing out-of-pocket costs
and lost time in the care process. This finding is not surprising given that
the current incentive structure, focused on volume over value, encourages
overuse and waste. As multiple participants noted, the United States spent
roughly 17 percent of its gross domestic product on health care last year,
yet this investment did not yield the health outcomes commensurate with
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9
SYNOPSIS AND OVERVIEW
the costs. To gain greater value, many participants stressed that the costs
and outcomes of care should be more transparent to patients, and new
payment models—ranging from bundling payments for an entire episode
of care, to pay-for-performance systems, to global payment—need to be
implemented.
Accountable. All relevant aspects of the clinical experience, including
patient perspectives, should be captured and routinely assessed against ex-
pectations. This information is vital not only to achieving effective patient
management, but also to judging whether experiments with new delivery
system models, payment incentives, or standards of care are having their
intended effect on improving patient health and promoting efficiency.
Measuring performance and disseminating innovations that work (and
eliminating those that do not) constitute a systematic way of improving
healthcare delivery. One presentation highlighted how this systematic ap-
proach to improvement allowed the speaker’s organization to enhance care
by conducting comprehensive reviews of interventions for different condi-
tions, adopting the best practices identified by that review, and measuring
the performance of the revised standard of care.
Transparent. Information on the outcomes of care—both effectiveness and
efficiency—should be readily accessible and understandable to patients
and their families. Several speakers mentioned the frustration felt by
patients regarding the lack of understandable information on the costs,
quality, and outcomes of care, especially in light of reports about medical
errors and the increasing personal burden of costs and inefficiencies of
care. It was noted that, when offered a choice, patients do not routinely
choose more costly or more intensive interventions. However, patients
rarely have choice or information about alternatives. It is clear that infor-
mation needed to improve value—better outcomes at lower cost—requires
transparent information on the costs and outcomes of care.
Trustworthy. Patients should expect a strong and secure trust fabric on all
dimensions—safety, quality, security, efficiency, accountability, and equity.
In few areas of human endeavor is trust on each of these dimensions more
important. Yet one presenter noted that, even though 50,000 to 90,000
deaths per year are caused by medical errors, health care lacks the basic
trust elements of transparency and accountability needed to drive improve-
ments in quality and safety. In a learning system that draws lessons from
each care experience, public trust must be bolstered in all aspects of the
healthcare enterprise: equitable access to reliable clinician knowledge and
skills, safeguards on clinical processes, the privacy and security of medical
records, and the validity and safety of clinical trials.
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10 PATIENTS CHARTING THE COURSE
Learning. In a learning health system, the patient is an active contributor
to, and supporter of, the learning process. Each patient experience offers
the potential to deepen the knowledge base that drives care quality and
outcomes—at the individual, practice, and societal levels. A focus of the
workshop was the stake of the patient in fostering a digital health utility
that provides needed information to patients and their clinicians, ensures
synchronization among providers, and generates knowledge for progress—
for example, for comparative effectiveness insights, public health activities,
or postmarket monitoring of approved technologies and drugs. Refer-
ence was made, for example, to the need for a common core data set for
electronic health record–based data that would allow reliable, platform-
independent research across large patient populations. These are issues
in which patients have a strong stake, and they must have confidence in
the system’s functionality for the generation of timely and reliable new
insights.
Many participants stressed that meeting these important expectations
will require new tools, a new culture, and new organizational structures.
This transformation must start with patients’ involvement in their own
medical care and their inclusion in decision making about the treatment
that is best for them. Beyond individual patient decisions, workshop par-
ticipants discussed the importance of including consumers in healthcare
policy making at all levels—from hospital advisory committees to clinical
trials—to ensure that all levels of the healthcare system consider patients
at all times.
PRESENTATION SUMMARIES
The workshop presentations and discussions reviewed progress toward
a learning health system; explored the links among the three key aims of
care—science-driven, patient-centered, and value-enhancing; and identified
priorities, policy levers, and public engagement strategies necessary to move
forward. To provide context, the workshop began with keynote remarks
by Harvey Fineberg, president of the IOM. He provided an overview of the
current U.S. healthcare system and offered observations on the important
framework and impetus for progress provided by the foundational elements
of a learning health system in the context of the ACA.
The Learning Health System in 2010 and to Come
Dr. Fineberg addressed key challenges facing the U.S. healthcare sys-
tem, drawing attention to the nation’s high expenditures on health care.
The United States spends $7,500 per person on health care, yet life expec-
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11
SYNOPSIS AND OVERVIEW
tancy, infant mortality, and system performance lag behind those of many
developed countries that spend far less (OECD, 2009). In 2009 the United
States spent $2.5 trillion on health care, which, as noted, represents nearly
17 percent of gross domestic product. In the coming years, expenditures are
expected to continue to climb and life expectancy is expected to worsen if
the healthcare system continues to function as it does today.
A learning health system, as defined in the charter of the Roundtable
on Value & Science-Driven Health Care, is a system designed to generate
and apply the best evidence for care; provide evidence discovery as a natural
outgrowth of patient care; and strive for innovation, quality, safety, and
value in health care. In redesigning the health system to transition to this
ideal, patients and the public must be engaged as active partners. Their
perspectives are invaluable on topics ranging from how to personalize care
and treatments to how to judge the value of care delivered. Despite the
potential, evidence suggests that the system currently engages the public
and patients in a limited fashion at the level of either the health system
or individual healthcare decisions (Berwick, 2009; Sepucha and Barry,
2009; Zikmund-Fisher et al., 2010). Increased involvement of the public
and patients is essential for progress toward a learning health system and
greater value in health care.
Passage of the ACA just 7 days before this workshop added momentum
and urgency to transforming the health system. However, passage of this
legislation alone will not accomplish this transformation; careful imple-
mentation will be necessary to better orient health care toward science and
value. In short, reform will be an ongoing process and evolve over time in
response to changing national conditions. Sustaining these reform efforts
will require the creation of a learning culture that nurtures systems and
enables continuous learning, improvement, and innovation.
Clinical Research, Patient Care, and Learning
That Is Real-Time and Continuous
A learning health system seeks to develop and continuously refine the
evidence base needed for timely care, tailored to individual patient needs.
However, the rapid pace of development of new therapies and ongoing
evolution of existing treatment strategies create substantial, unmet demands
on the research enterprise as current clinical research approaches require
significant investments of time and resources but offer only static deter-
minations of the average treatment effects on narrow and homogeneous
populations (Greenfield et al., 2007). As a result, only a fraction of the
many pressing clinical questions can be investigated, and research findings
are limited in their timeliness and generalizability to real-world patient
populations (IOM, 2009, 2011b).
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22 PATIENTS CHARTING THE COURSE
fails to engage patients and support their active participation in manag-
ing their own health, the nation will still fall short of its health goals.
Tang illustrated how health information technology has been helpful in
transforming the patient experience of a chronic disease such as diabetes.
The Foundation provides patients with wireless glucometers that transmit
glucose readings to its electronic health records system; the readings are
then displayed on a diabetes dashboard and can be viewed and annotated
by patients and providers. These data provide an important opportunity
for patients and providers to actively monitor blood glucose and examine
how it varies with daily diet, exercise, and medication regimens. Thus,
patients have been able to learn how their behavior and decisions impact
their health outcomes and improve their health conditions.
Health and Disease Management Outside the Clinic Doors:
There’s an App for That!
Healthcare delivery continues to change to adapt to an aging popula-
tion, increased prevalence of chronic conditions, genomic medicine, and
information technology advances. Dorianne C. Miller, formerly of the Uni-
versity of Chicago Medical School discussed three examples of innovative
approaches to improve healthcare delivery by extending care outside of the
clinical practice setting. The first example is a patient electronic health re-
cords portal that facilitates communication between chronically ill patients
and their providers and allows patients to store all of their health-related
information together in a shared care plan. This system has increased pa-
tients’ satisfaction with their clinical care and lowered costs by $3,000 per
year for enrolled patients. Second is a web-based support group that allows
patients to form a community that can support each member as well as
provide information to the members’ clinical partners that may affect their
care. Although results are not yet available, the program has drawn interest
and highlighted the importance of addressing privacy and security for the
participants. A final example is electronic provider visits, which extend the
availability of primary care providers to care for nonurgent conditions and
enhance patient–provider communications. An initial assessment of this
program found that it reduced work absences, decreased costs, and lowered
the number of times patients had to visit a physician’s office to solve their
clinical problems. Barriers to broader adoption of these electronic applica-
tions include the social acceptability of visiting doctors via the Internet,
limited access to the Internet among certain groups, a lack of electronic
health records in many physician practices, and unknown reimbursement
for delivering care electronically.
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SYNOPSIS AND OVERVIEW
Applying Evidence for Patient-Centered Care: Standards and Expectations
Improving how evidence is communicated to patients is a critical chal-
lenge that must be addressed in transforming the health system to one that
is centered on patients’ individual values and preferences. Presenters of the
papers included in Chapter 7 explored the added value of shared decision-
making tools in helping patients decide among clinical options, ways to
develop evidence that better meshes with individual patient needs, and
methods for communicating evidence when the evidence base is uncertain.
The Role of Evidence in Patient-Centered Care
Regardless of whether the evidence available on treatment options is
clear or uncertain, patient-centered care should ensure that “patient values
guide all clinical decisions” (IOM, 2001). The current method for patient
feedback—the informed consent process—falls short of the goal of helping
patients understand risks and benefits to make informed decisions, accord-
ing to Dale Collins Vidal of the Dartmouth Institute for Health Policy and
Clinical Practice. Particularly when a patient faces treatment decisions not
supported by adequate evidence or when treatment can impact a patient’s
quality of life, both patient and provider would benefit from a more struc-
tured decision-making process that supported informed patient choice,
incorporating a discussion of treatment alternatives, the best evidence avail-
able, and the patient’s personal values. An alternative to the current deci-
sion model is shared decision making, a process that requires both patients
and providers to contribute information and participate. Dartmouth has
implemented shared decision making by deploying decision aids, conduct-
ing surveys of patient preferences and reported health information, pro-
viding feedback to patients about their health behaviors and conditions,
and feeding forward information helpful to clinicians at the point of care.
Results from experiments with shared decision making have shown its
impact on treatment choices: 30 percent of patients changed their initial
treatment preference, and the overall rate of surgery was 22 percent lower
(Deyo et al., 2000). Further adoption of this patient decision model will
require comprehensive training of healthcare providers, increased consumer
health literacy, and the successful identification of implementation models.
Evidence Standards and Application: Right Care, Right Patient, Right Time
Evidence standards and their application to treatment decision mak-
ing must account for specific clinical circumstances, individual variation,
and the range of intervention types. As described by Clifford Goodman
of The Lewin Group, evidence hierarchies and their application to patient
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24 PATIENTS CHARTING THE COURSE
care have remained relatively constant despite incremental modifications.
Although randomized controlled trials provide strong internal validity,
overreliance on this experimental design is a critical limitation to getting the
right care to the right patient at the right time. Goodman suggested the need
to develop a diversity of evidence methodologies that are better tailored to
specific research questions and account for real-world variations in indi-
vidual circumstances, patients, and settings. An alternative evidence rating
approach has been introduced by the Evaluation of Genomic Applications
in Practice and Prevention initiative, which advocates a systematic process
for evaluating genomic tests based on analytical validity, clinical validity,
and clinical utility. Other promising approaches use multiple and comple-
mentary methods to triangulate findings. Advances in evidence standards
will require engaging the public on the nature of evidence, as well as fos-
tering greater interaction among innovators, regulators, payers, and health
technology assessment organizations with respect to evidence expectations.
Translation and Communication Needs for Care in the Face of
Uncertain Evidence
Ensuring that patients are informed and active partners in health care
requires effective approaches to translating and communicating evidence.
Unfortunately, many health messages are delivered to the public in an overly
brief and simplistic manner. Fran Visco of the National Breast Cancer
Coalition reviewed the effects of this communication strategy in cases
where evidence is uncertain. One illuminating case study is the controversy
over the U.S. Preventive Services Task Force’s updated recommendations on
breast cancer screening. One reason these recommendations generated such
controversy is that they conflicted with previous communication campaigns
that ignored the limitations of mammographic screening, and failed to ad-
dress the uncertainty surrounding the evidence behind screening. Lessons
learned from this case study include the need to be honest with patients
about uncertainty; the role professional societies play in influencing clinical
recommendations; and the need to better educate policy makers, the media,
and the public about the importance of evidence.
Team-Based Care and the Learning Culture
A system in which health professionals work as individuals limits the
coordination of care, prevents the flow of information, and discourages
quality improvement. Therefore, a team-based culture is key to a learning
health system and improved patient care. Presenters of the papers included
in Chapter 8 addressed fundamental elements of team culture, ways to
create and sustain an environment that fosters the pursuit of clinical excel-
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SYNOPSIS AND OVERVIEW
lence and continuous improvement, and the use of teams to structure care
transitions that are efficient and ensure that the right person is transferred
in the optimal way.
Practical Experience with Collaborative Models in the Health Professions
Team-based care involves more than the coordination of individuals
responsible for a patient’s care. According to Allan Frankel and Michael
Leonard of Pascal Metrics, successful continuous learning environments link
teamwork with improvement. Currently, few in health care methodically
combine these elements, probably because of differences in the origins and
backgrounds in teamwork training and improvement science. Teamwork
training is based on a combination of psychology, sociology, and engineering
while being heavily influenced by the science of human factors. In contrast,
improvement science focuses on using statistics to manage variation in stable
industrial processes and derives from the teachings of skilled statisticians and
managers. Weaving these disciplines together is the responsibility, and a core
function, of hospital leaders and healthcare managers.
Frankel described several key barriers to the implementation of a col-
laborative improvement model. First, the culture of medicine often has
a hierarchical structure, whether based on academic stature, hospital–
physician relationships, or other factors. Second, managers currently have
limited appreciation of the components of a continuous learning environ-
ment or how such an environment can be achieved. Finally, senior leaders
must devise strategies and allocate resources to ensure that continuous
learning systems thrive.
Measures and Strategies for Clinical Excellence and Continuous
Improvement
Developing new models of collaborative care requires engaging all team
members, including patients, in the development of evidence and its use to
ensure that healthcare decisions are grounded in effectiveness, safety, and
value. As noted by Joyce Lammert of the Virginia Mason Medical Center,
this paradigm shift in the practice of medicine will require a fundamental
change in the approach to learning and its application in providing health
care—one that involves leveraging teams to support systems of clinical ex-
cellence and continuous improvement. Rapid advances in science and tech-
nology, as well as the complexity of twenty-first century care, have made old
paradigms of learning and caring for patients obsolete. The necessary cul-
ture change must start in medical school, with a focus on examining patient
care processes. As much of the content of medical education will be out of
date by graduation, more emphasis is needed on skills for lifelong learning,
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26 PATIENTS CHARTING THE COURSE
such as how to ask the right questions and use information systems to ob-
tain just-in-time answers that are evidence-based and reflect best practices.
Similar changes may be needed on the organizational level and throughout
residency training as well to encourage interdisciplinary and team-based
practices. Finally, moving toward a learning health system will require other
changes in such areas as recruiting, the practice environment, continuing
education, and the payment structure.
Care Cooperation and Continuity Across Clinicians, Facilities, and Systems
Adverse events often occur during care transitions and too often result
in hospitalizations, lower quality of care, and reduced patient satisfaction.
Alice Bonner, formerly of the Massachusetts Department of Public Health
(now Centers for Medicare & Medicaid Services) summarized work ongoing
in Massachusetts to identify and quantify issues associated with care transi-
tions and develop and implement a statewide strategic plan for addressing
those issues. The goals of this strategic plan are to disseminate current
knowledge about effective care transitions, summarize the state’s current
projects on care transitions, and build consensus among stakeholders on the
most important principles of care transition. Key lessons learned from this
process include the importance of including the patient’s voice in the process,
the need to engage stakeholders early to improve cooperation across institu-
tions, and the importance of using evaluation measures to track progress.
The plan is now being implemented, with workgroups refining and deploy-
ing a statewide form and process for interfacility transfer, and education
efforts on effective care transitions being initiated.
Incentives Aligned with Value and Learning
Transformative change of the health system will require incentives
that are aligned with a learning health system. Incentives should focus on
promoting value over volume, revamped payment schemes supporting sci-
ence and value, and changes in insurance design. Presenters of the papers
included in Chapter 9 provided examples of strategies that show promise
for helping to realign the health system. Taken together, these papers offer
key strategies that can contribute to a reengineering of the system.
Paying for Value and Science-Driven Care
If the current trajectory of healthcare spending continues, by 2020 the
U.S. debt will reach 90 percent of the gross domestic product ratio (CBO,
2010). Michael Chernew of Harvard University argued that addressing this
fiscal situation will require a focus on value and reduced growth in spend-
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SYNOPSIS AND OVERVIEW
ing. Chernew discussed several incentive structures designed to promote
value, from pay for performance, to episode-based bundled payments, to
global payment. Although all of these approaches are promising, each has
technical challenges that must be addressed before its widespread applica-
tion can reduce the cost trajectory. In particular, each new payment model
will require performance measurement that can account for new clinical
evidence and healthcare innovation. Crucial determinants of success for
these and future payment systems will be their capacity to contain costs,
the way they incorporate quality and performance measures, their ability
to incentivize patients appropriately, the availability of cost and quality
information, and the way they encourage organizational reform.
Generating Evidence to Guide Care
Innovation in the American health system is driven by financial incen-
tives that reward volume and provider revenue. According to Richard
Gilfillan, formerly of Geisinger Health Plan, there are ample opportunities
for improving the value for patients in the healthcare system. However,
whether the system produces more or less value for patients depends on
the industry’s business model. Gilfillan illustrated the impact of the current
healthcare business model on innovation. Businesses proactively select in-
novation and learning initiatives that promise to provide a positive return
on investment. Businesses further avoid innovations that might threaten
their future success; an example is hospitals traditionally avoiding programs
designed to decrease readmissions. Therefore, changing healthcare practice
will require changing the healthcare business model toward one that re-
wards value. Gilfillan noted further that improvement will require multiple
incentives, not just financial ones, as well as dissemination of best practices
and leadership by clinicians and payers.
Creating a Learning Culture
Although financial incentives are clearly instrumental in transforming
the health system, powerful nonfinancial incentives can be used to influence
behavior and create a learning culture. Anne Weiss of The Robert Wood
Johnson Foundation highlighted several of these nonfinancial incentives,
from performance measurement, to technical assistance, to patient engage-
ment. These incentives are central to the Aligning Forces for Quality strat-
egy, which is currently being implemented in 17 regions across the country.
Although still under development, the strategy has produced several insights
into how to move toward a learning health system. First, health care is
delivered locally, and different localities will have different needs. Second,
strategic communication is critical to engage the general public, physicians,
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28 PATIENTS CHARTING THE COURSE
patients, and employers in healthcare improvement. Third, progress will
require participation by multiple stakeholders, from health system leaders
to patients, each of whom has a role to play in measuring and improving
quality. While the Aligning Forces for Quality project focused on non-
financial means of creating a learning culture, such efforts are impeded by
traditional payment systems that often punish learning and improvement,
a fact that underscores the importance of reforming the payment system to
reward quality and value.
NEXT STEPS
The workshop participants expressed optimism about building a learn-
ing health system that focuses on patients and consumers. Although many
barriers may hinder this transition, transformational change is within reach.
Comments offered throughout the workshop highlighted the following key
questions, many of which may be addressed through the convening capacity
of the Roundtable, whose exploration offers opportunities for advancement
in different healthcare sectors.
Clinical Effectiveness Research
• How do various research methodologies produce results that con-
tribute to personalized treatments, real-time learning, and clinical
relevance? Should the Roundtable and its Clinical Effectiveness
Research Innovation Collaborative develop a new taxonomy of
research approaches that advance these goals?
• What steps can encourage greater patient involvement in the evi-
dence process, from fostering participation in clinical trials, to
initiating data collection for disease research, and developing appli-
cations from existing data?
Evidence Communication
• How can the Roundtable and its Evidence Communications Inno-
vation Collaborative encourage the development of best practices
in health communications, whereby complex information is deliv-
ered in simple and easy-to-understand formats? What steps can
be taken to compile information on successful concepts, such as
patient coaching, question checklists, and patient decision aids?
• What steps can be taken to encourage the education system to
teach students how to analyze health information as well as related
concepts, such as how to gauge risks and benefits, in order to pro-
mote broader health literacy?
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SYNOPSIS AND OVERVIEW
• How can the Roundtable connect leaders from enterprises with
expertise in consumer communications, such as media outlets and
advertising, with health system leaders to transfer the lessons they
have learned?
• Given that the media are a key supplier of health information, what
steps can be taken to enhance the health literacy of journalists so
as to improve the information delivered to the public?
• With more Americans obtaining health information from the
Internet, how can the Roundtable encourage the development of
websites with authoritative medical information for consumers?
Best Practices
• Given the benefits of engaging patients and families in their medical
care, how might patient-centered care be encouraged throughout
the medical system?
• What steps can the Roundtable and its Best Practices Innovation
Collaborative take to encourage the use of technologies, such as
dashboard displays or procedure checklists, that reduce variability
in care management and improve the reliability of the use of best
practices?
• What impediments prevent patient preferences and goals from be-
ing considered in all care decisions?
• Given the advantages of team-based care in promoting coordinated
care and quality improvement, how can a team approach to care
delivery be encouraged?
Electronic Health Records
• Developing a learning health system will require the use of clini-
cal data as a reliable source for clinical research. How might the
Roundtable and its Electronic Health Record Innovation Collab-
orative encourage the development of standards and approaches to
assure the quality of these data?
• Since an effective health information utility was identified as a
prerequisite for care coordination, continuous learning, and mea-
surement of outcomes, what steps could the Roundtable and its
Electronic Health Record Innovation Collaborative take to acceler-
ate the adoption and use of such a utility?
• Given the accelerated development of medical evidence, what
might the Roundtable do to explore expanded decision support at
the point of care?
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30 PATIENTS CHARTING THE COURSE
Value
• With the creation of new reimbursement incentives to promote
value, how might the Roundtable and its Value Incentives Learn-
ing Collaborative develop a framework for ongoing assessment of
the efficacy of these reimbursement experiments with respect to
increasing value?
• What specific actions could be taken to reduce healthcare costs
and increase value? What incentives are needed to encourage those
actions?
• What incentives, financial or otherwise, are needed to encourage
providers to place greater emphasis on engaging patients in their
care?
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