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4
Engaging Patients to Improve Science
and Value in a Learning Health System
INTRODUCTION
An informed patient, invested in healthcare improvement and engaged
in shared decision making, is central to a learning health system. Inherent
to this vision is the notion that patients bring unique and important per-
spectives to health care, as well as the ability to spark improvement; both
of which are essential to closing important gaps in health system perfor-
mance and ensuring that care is effective. Unfortunately, patients, families,
and caregivers too often are not engaged as meaningful decision makers
in their own care or as partners in health research. This shortcoming has
been associated with improvements in the effectiveness, safety, and patient
experience of care (Coulter and Ellins, 2007). Given these initial promising
results, a key challenge will be to foster the development of a learning cul-
ture in health care, in which patients’ contributions to health improvement,
clinical research, and their own health decisions are expected and embraced
by the health system.
The papers in this chapter explore what is meant—theoretically and
practically—by patient engagement in health care, and how health systems
might better learn from patient participation to advance clinical science
and healthcare delivery as well as better support patients in care and care
management decision making. Strategies for improving public awareness of
key opportunities for such engagement and for providing tools to enable
greater participation also are discussed.
The first paper, by Sharon F. Terry of the Genetic Alliance, offers a
vision for the range of contributions patients and the public can make
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96 PATIENTS CHARTING THE COURSE
to improve research. Patient-initiated data collection initiatives, including
social networking and information sharing services, have provided impor-
tant resources for discovery and played a role in better informing patients
and investing them in the research enterprise. James Conway of the Institute
for Healthcare Improvement explores the potential for greater patient and
public engagement to improve health system performance, noting the grow-
ing evidence base of how patient engagement could improve a wide array of
health and system outcomes, from patient adherence, to clinical outcomes,
to financial performance. He proposes a framework to better connect and
align the interventions currently under way and encourage and support the
development of effective public engagement initiatives. A third paper, by
Karen Sepucha of Massachusetts General Hospital, addresses opportuni-
ties to better engage patients in treatment decisions through more effective
patient–provider communication about patient concerns, expectations, and
preferences in order to make shared decision making a routine part of the
clinical care encounter.
INVESTING PATIENTS IN THE RESEARCH AND
CONTINUOUS IMPROVEMENT ENTERPRISE
Sharon F. Terry, M.A.
Genetic Alliance
At the center of a learning health system are individuals, families, and
communities. As all citizens are eventually members of this stakeholder
group, an effective healthcare system must keep this group’s interests para-
mount. The learning touted as part of the exemplary system must fuel
action to transform health care to better serve the needs and interests of
individuals, families, and communities, and in essence be accountable and
self-correcting. A key component of such a system is a culture that pro-
motes and supports public interest and investment in helping to advance
the research enterprise. Although public engagement in health care is often
viewed from the narrow perspective of participation in clinical trials, many
initiatives currently under way create a very different vision for the range of
contributions individuals, families, and communities can make to improve
research efforts on the value, science base, and patient experience of health
care delivered—from information for basic research to efforts to drive im-
provements to best practices.
This paper reviews trends in public awareness of and interest in oppor-
tunities to contribute to learning about what works in health care, such as
improving access to and expanding the use of clinical data, and provides ex-
amples of initiatives aimed at supporting patients in these roles. Key lessons
learned from current efforts to improve public understanding of the issues
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ENGAGING PATIENTS TO IMPROVE SCIENCE AND VALUE
involved and encourage patient contributions to learning in health care are
identified, as well as communication strategies that move beyond disease-
centric approaches to increase receptivity and insistence by the public with
respect to their engagement and investment in the research enterprise.
A Learning Health System
Individuals, families, and communities, while serving as the primary
focus of a learning health system, interact with the system in different
ways. Collectively, however, these stakeholders value a system that focuses
on prevention and wellness, proper diagnosis, and individualized care. An
ideal system therefore requires an intelligent blend of savvy stewards and
systems that advance the public’s health on the one hand, and on the other,
consumer-initiated and/or consumer-driven tools and resources that ag-
gregate and analyze clinical and other health information over time to help
enhance understanding of health and disease.
Progress toward this ideal system requires expanding the current con-
cept of a healthcare system to include promoting health, not simply address-
ing disease. A robust healthcare system must not only include prevention
(Frieden, 2010); it must focus on prevention and wellness if the greatest
improvements in both health and the system that serves it are to be realized.
Further, the current healthcare system expends a great deal of resources
on treatment and not enough on diagnosis, the highest priority for health
care according to innovator Clayton Christensen (Christensen et al., 2008;
Frieden, 2010). Diagnosis lends a critical granularity to the treatment pro-
cess, allowing the individualized medicine in which the public is so inter-
ested. Although a great deal of attention is given to genetics and genomics
as the backbone of personalized or individualized medicine, it is probably
more accurate to assume that all of medicine, properly executed, should
be individualized, with genetic and genomic information integrated into
the individualized plan. The impact will be felt by the diagnosed; the not
yet diagnosed, which might be termed the general public; and the public’s
health.
Finally, although not an issue at the forefront of public attention, the
system needs to be oriented around learning and continuous improvement,
or progress toward more efficient and effective health services will continue
to be dismally slow.
Beyond Trial Participation:
Enabling Consumer Contributions to Learning and Research
While recognizing the importance of the perspectives of the other
system stakeholders, this paper focuses only on the consumer perspective.
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98 PATIENTS CHARTING THE COURSE
The paper highlights efforts of some of the 1,200 disease-specific organiza-
tions that make up the Genetic Alliance,1 as well as others, to empower
consumers to drive learning in health care. A common perspective of these
organizations is that keeping the essence and ultimate mission of their work
on the patient will necessarily shorten the distance between discovery and
services. When faced with a loved one’s devastating illness, it becomes easier
to measure every action and develop a plan to help achieve the ultimate
objective of improving the prognosis for a disease.
Clinical trials are an important part of the healthcare system, albeit in
the translational rather than the services realm. Best estimates for enroll-
ment in clinical trials for cancer indicate that fewer than 5 percent of adults
diagnosed with cancer each year participate in such trials (NCI, 2001).
From the National Institutes of Health to the largest pharmaceutical com-
panies, difficulty in enrolling individuals in these trials is of major concern.
At the same time, clinical trials are just one opportunity for consumers
to contribute to research and health advancement, and many notable initia-
tives are beginning to provide a means for consumers to help catalyze the
creation of a learning health system through better use of the clinical data
and information now being amassed. With these contributions, the system
itself will generate hypotheses, not just collect and redisplay data and test
hypotheses. The data can talk, and with appropriately balanced privacy
and confidentiality protections, individuals and families can communicate
to the health information exchange systems in their lives what it is that
they value. In this ideal system, the system architecture, the privacy scheme,
and the manner in which they assist consumers to cut through a mass of
decisions to establish highly granular privacy settings without becoming
overwhelmed will be simple (see the section below on consumer health
information systems).
Initiatives that provide consumers with control over their data and the
opportunity to open access to their data for research have tremendous po-
tential for advancing a consumer-driven culture of research and continuous
improvement. However, much more needs to be learned about how to en-
courage consumers to see the value of such engagement. Several key lessons
learned to date are illustrated by the examples provided below.
Biologic Repositories and Clinical Registries
The Genetic Alliance BioBank2 is a biologic repository and clinical regis-
try established in 2003. It was built on the infrastructure of a disease-specific
bank established in 1995 for a rare genetic condition called pseudoxanthoma
1 See http://geneticalliance.org (accessed October 11, 2010).
2 See http://biobank.org (accessed October 11, 2010).
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ENGAGING PATIENTS TO IMPROVE SCIENCE AND VALUE
elasticum (PXE). PXE International advised a large number of other disease-
specific organizations and determined that the community would be better
served with a cost-effective, shared common infrastructure. The community
using the BioBank—a number of large and small common and rare disease–
specific organizations—brings donors closer to the research enterprise they
wish to impact. Researchers using the BioBank can solicit clinical information
over time and as needs emerge by making requests to disease-specific orga-
nizations (for example, the National Psoriasis Foundation, the Inflammatory
Breast Cancer Research Foundation, the Chronic Fatigue and Immune Dys-
function Syndrome Association of America). Thus the gap between research
and those waiting for treatment is narrowed. Members of the disease com-
munity drive the research through understanding of the day-to-day issues of
living with the condition.
Consumer Health Information Systems
Private Access enables individuals to establish granular privacy settings
for clinical information that, when properly catalogued, allows researchers
to find individuals for specific cohorts. This technology allows individuals to
grant “private access” to all or selected portions of their information and
thereby determine the information flow with which they are comfortable,
mitigating privacy concerns (Lo and Parham, 2010). The controls can be
granular down to the data element if desired, enabling individuals to decide
whether their genetic, mental health, or any other information they deem
sensitive should be shared and if so, with whom. Moreover, the controls
are dynamic—anticipating that users will wish to change their settings as
their circumstances change and as different needs arise or levels of trust
are established. From simple scenarios such as releasing one’s child’s im-
munization record to a summer camp to making one’s clinical information
searchable by selected researchers, this online system provides an important
service. It includes a comprehensive audit log and tracking, all consistent
with emerging health information technology standards for the coming
years. Trusted guides in this system help users establish privacy preferences,
which can be difficult to navigate depending on the user’s literacy level.
The healthcare system in the United States (and often abroad as well)
can be paternalistic. A highly hierarchical system, with “expert” gate-
keepers in the form of physicians, limits the learning that can be accom-
plished by the system. A system in which all stakeholders play a role and
in which consumers are offered the opportunity to help drive learning is
much more nimble. The current healthcare system does not allow the kind
of consumer engagement needed for a learning health system. Therefore, it
is critical to understand how to better guide people to become empowered
and informed consumers.
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100 PATIENTS CHARTING THE COURSE
Social Networks and Information Sharing
Consumers are helping to advance learning about health care at a rapid
rate through multiple means. An excellent example of the power of con-
sumer participation is PatientsLikeMe®. The founders, Massachusetts Insti-
tute of Technology (MIT) engineers, describe their endeavor this way: “Our
goal is to enable people to share information that can improve the lives of
patients diagnosed with life-changing diseases. To make this happen, we’ve
created a platform for collecting and sharing real world, outcome-based
patient data and are establishing data-sharing partnerships with doctors,
pharmaceutical and medical device companies, research organizations, and
non-profits.”3 The site allows individuals to aggregate and share their infor-
mation with one another, and also to choose to share clinical information
with pharmaceutical companies. Some may argue that this does not consti-
tute real learning for the biomedical enterprise because some data are self-
reported, because individuals’ quality of life is weighted heavily, or because
individuals are too involved to maintain the objectivity traditionally sought
in clinical research. Moreover, participants and the medical team managing
the site are beginning to see trends in the participants’ progression relative
to their treatment plans in a far more dynamic and timely manner than is
possible with traditional natural history or other clinical trials.
Another example of the power of consumer engagement is Facebook.
As of this writing, 520 million members of Facebook from around the
world have created 1.2 million health groups on the site. This phenomenon
demonstrates an intense interest among people in engaging in some activity
around health, and it challenges traditional bricks-and-mortar organiza-
tions, in networks such as the Genetic Alliance and the National Health
Council, to consider new ways of meeting the needs of consumers. Indi-
viduals who once had to make a substantial effort to connect with others
around a health issue now find it easy to do so. If 10 years ago one imag-
ined creating a business to sell books from attics and basements through-
out the world, this model would have appeared to be unsustainable. Now
Amazon and other “long-tail” technologies enable just that. These advances
have not yet been incorporated into medicine and health.
Another good example, the Love/Avon Army of Women,4 has attracted
more than 300,000 women who do not necessarily have breast cancer, but
are simply interested in improving the health of women. Founder Dr. Susan
Love started this initiative to provide researchers with a large cohort of
healthy women available to take part in research into the causes of breast
cancer.
3 See http://patientslikeme.com (accessed October 11, 2010).
4 See http://www.armyofwomen.org/ (accessed October 11, 2010).
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ENGAGING PATIENTS TO IMPROVE SCIENCE AND VALUE
Genetics and Genomics: Advancing Individualized Medicine and
Public Health
The explosion of information in genetics and genomics creates a ten-
sion between the amount of information available and its interpretation.
Consumer-oriented learning in this domain will be essential to the integra-
tion of genetics into medicine, and consumer genomics companies are ad-
vancing this concept at a rapid rate. There are several such companies, the
most commonly referred to being 23andMe, Navigenics, and deCODEme.
For example, 23andMe aggregates the data of individuals who pay to have
hundreds of thousands of single nucleolide polymorphisms (SNPs) geno-
typed by the service. These are not primarily individuals with a diagnosis,
such as those involved in PatientsLikeMe. The individuals who participate
in 23andMe are not seeking a disease community perspective, but instead
are interested in genotyping embedded in social networking technologies.
23andMe reports genotypes to individuals, aggregates the scientific lit-
erature on those SNPs, and presents representations of an individual’s
SNPs compared with interpretations in the current scientific literature and
genealogic databases. Individuals can then examine categories called Dis-
ease Risk, Carrier Status, Drug Response, and Traits. The company offers
genetic counseling and the opportunity to compare one’s genotype with
everyone else’s in the database and find potential relatives.
As another example, the company Illumina has created an iPhone ap-
plication for use with its genome sequencing service. Users can compare
their genome with someone else’s and receive updates in the interpretation
of that genome on the fly.
Ethicists and regulators have concerns about services provided by
these consumer-oriented companies, offering what is often called direct-to-
consumer marketing. There is no question that all genetic testing, regardless
of the service delivery method, should have appropriate oversight leading
to safe and efficacious testing and interpretation. This has been and will
continue to be an iterative process for the various systems engaged. Letters
sent to several of these companies by the Food and Drug Adminstration5
declare the agency’s determination that the companies must get approval
for the testing services they offer. This is a time of dynamic tension between
two systems. The more staid, and perhaps antiquated, regulatory system
is characterized by great caution and dependence on traditional models of
evidence that derive from reliance on traditional experts, and do not allow
for the involvement of consumers and the accelerated learning that comes
from systems that are able to capture their wisdom. Direct-access testing
5 See http://www.fda.gov/MedicalDevices/ResourcesforYou/Industry/ucm111104.htm (ac-
cessed October 11, 2010).
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102 PATIENTS CHARTING THE COURSE
could be an important catalyst for increasing the learning of the health
system in a more dynamic way. In addition, direct-access testing accelerates
the examination of social issues and policies around genetic testing and
technologies and their delivery.
In considering a learning health system, it is important to include public
health. The newborn screening system, probably the nation’s most success-
ful public health program, is an excellent program in which the sharing
of information could serve to engage the public in the healthcare system.
Most parents do not even know that their child has been screened or that
their state has stored the child’s dried residual blood spot. The results have
ranged from distrust to lawsuits and destruction of these blood spots. If
parents participated in the decision to store blood spots and further, using
a dynamic electronic consenting system, consented to levels of use for them,
this currently invisible system would enjoy greater support. Integration of
the newborns’ screening results with the dried blood spots, dynamic con-
sent for use, and electronic and personal health records can constitute an
important learning system for health in the United States. Almost 5 mil-
lion babies are screened each year, representing 99 percent of the nation’s
newborns, so this accomplishment would serve as the basis for a national
clinical registry and biological repository system. Efforts such as those of
the Genetic Services Branch of the Health Resources and Services Admin-
istration and Genetic Alliance’s Newborn Screening Clearinghouse give
parents and providers ways of interacting with the system so it can learn
from the engagement.
Another federally funded effort, the Genetics for Early Disease Detec-
tion and Intervention to Improve Health Outcomes (GEDDI) program of
the Centers for Disease Control and Prevention, is also capturing learning
in the system to accelerate the usefulness of genomic applications. Under-
standing that there is far too much information for any clinician to digest
in making decisions about the use of genetic and genomic tests, GEDDI is
building a knowledge base and using the public participation tool Google
Knol to create a body of expert-moderated knowledge that will allow cor-
relations to be drawn and affirmed more quickly than is typical in more
traditional models. Ultimately the program is asking when and where genet-
ics can be used for early detection, and answering this question will require
consumer participation in the process of understanding what brings value
not only for the individual, but also for communities and ultimately the
public’s health on a large scale.
Concluding Observations
The activities described in this paper reveal that there is a long way to
go in developing the policies necessary to encourage and support patients
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ENGAGING PATIENTS TO IMPROVE SCIENCE AND VALUE
becoming invested in the research and continuous improvement enterprise
of a learning health system. However, they also indicate an increasing inter-
est among the general public in participating in health care—rather than
just being spectators, and given the acceleration of consumer-driven ad-
vances in other fields—such as the computer industry, health care will accel-
erate its learning with increased consumer participation. Indeed, data from
the Genetics and Public Policy Center indicate that individuals would like
to participate in large data collection efforts in the United States and would
like to receive individual results (Kaufman et al., 2008). When individuals
in these surveys and town halls were asked whether they would participate
if they did not receive individual results, 75 percent said they would be less
likely to participate. Regardless of one’s opinion on sharing results, such
data indicate that the public would like to participate and learn.
A learning health system is not just a laudable goal but is essential for
the health of the nation. At present, we are dependent on antiquated sys-
tems that rely on hierarchical gatekeeping. Phenomenal advances have been
made in many areas of technology that can support social services. Health
care lags behind other domains in its ability to capitalize on the learning
available to it. Ultimately, the problem may lie in “knowledge turns,” a
term to describe “how well we transform raw ideas into finished products
and services” (Savage, 2010). Knowledge turn rates describe many kinds of
transactions in this information age. Disruptive insertion of consumers into
the equation will ultimately generate faster knowledge turns and accelerate
the learning of the health system.
PUBLIC AND PATIENT STRATEGIES TO IMPROVE
HEALTH SYSTEM PERFORMANCE
James B. Conway, M.S., M.A.
Institute for Healthcare Improvement
The charter of the IOM Roundtable on Value & Science-Driven Health
Care underscores the centrality of the patient. The summary of the Learning
Healthcare System workshop refers to both the need for a culture of shared
responsibility that includes patients, providers, and researchers and the
need for improved communication around the nature of public engagement
(IOM, 2007). Widespread federal, state, public, and private position and
policy statements, as well as those from healthcare industry leaders, speak
to the importance of engagement of the patient, family, public, and com-
munity (Berwick, 2009). Excitement about public engagement grows daily,
driven as much by financial constraints as by the synergy of engagement
and improvements in population health and the healthcare experience. This
excitement is being fueled by early successes in communities, organizations,
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104 PATIENTS CHARTING THE COURSE
and microsystems and in the direct experience of care, as well as by the
increasingly widespread view that members of the public must “do their
part to improve outcomes and reduce cost” (AHA, 2004; Frampton et al.,
2008; IHI, 2009; Johnson et al., 2007).
Yet there exists no widely embraced framework defining patient (con-
sumer, public, family) engagement. Conversations about its meaning elicit
differing views, typically focused on one discrete aspect of the issue. Opin-
ions of health professionals about what the public “wants” or “needs to
do” are often at odds with research findings on these issues. The need for
and potential power of an overarching framework for public engagement
is apparent. With such a framework, the various interventions (threads) of
experimentation, research, and innovation could be connected for design,
measurement, assessment, and improvement purposes.
This paper briefly examines the current state of public engagement,
including shortfalls, definitions, opportunities, and evidence; presents a
framework for public engagement; and provides a focused charge for mov-
ing forward.
Shortfalls in Public Engagement
In the midst of exceptional care, caring, hope, and discovery, there is
extraordinary suffering, harm, tragedy, waste, and inefficiency in the health-
care system (IOM, 1999, 2001). Prevention and wellness are losing out to
failures in the patient experience and population health—failures such as
harm, obesity, and poorly managed chronic care. Care coordination fails both
at the system level and for the individual. If it is organized for anyone, the
care system is built around those who deliver care, not those who receive it.
Enormous national resources produce comparatively poor health outcomes.
There is a growing realization that until the healthcare system is or-
ganized around the patient and the public, it will not be transformed as
it needs to be. The Lucian Leape Institute of the National Patient Safety
Foundation presents five transforming concepts for health care, one of
which is that the public must become full partners in all aspects of health
care. The Institute believes, “if health or health care is on the table, the
patient/consumer must be at the table, every table. Now” (Leape et al.,
2009). Likewise, the National Priorities Partnership of the National Quality
Forum includes patient and family engagement as one of the six overarching
priorities of a transformed U.S. healthcare system (NPP, 2010).
Definitions of Patient Engagement
There are many descriptions and definitions of the attributes of patient
engagement and participation. Three are presented here.
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ENGAGING PATIENTS TO IMPROVE SCIENCE AND VALUE
The IOM defines patient-centered care as care based on continuous
healing relationships; care that is customized according to patient needs and
values; care where the patient is the source of control; care where knowl-
edge is shared and information flows freely; and care where transparency
is necessary and where the patient’s needs are anticipated (IOM, 2001).
The Institute for Family Centered Care (Institute for Family-Centered
Care, 2008) offers four key concepts for patient- and family-centered care,
all with a focus on collaboration:
• Dignity and respect—Providers listen and honor patient and family
perspectives and choices.
• Information sharing—Providers share complete and unbiased in-
formation in ways that are affirming and useful.
• Participation—Patients and families participate in care and decision
making.
• Collaboration—Patients and families collaborate in policy and pro-
gram development, implementation, and evaluation, as well as the
delivery of care.
Finally, according to the National Quality Forum’s National Pri -
orities, patient- and family-centered care is health care that honors each
individual patient and family, offering voice, control, choice, skills in
self-care, and total transparency, and that can and does adapt readily to
individual and family circumstances, and to differing cultures, languages,
and social backgrounds (NPP, 2010).
Striking in all of these definitions is the importance of control and
shared ownership—a clear sense of “we.” The aim is collaboration all the
time, not just when it is convenient. In the words of the Saltzberg Seminar,
“Nothing about me, without me” (Delbanco et al., 2001).
Opportunities: One View of What Is Possible
Decades of work demonstrate the powerful opportunities created by
public engagement. At Children’s Hospital in Boston in the 1970s, mothers
began to tell leaders and staff, “I don’t care who you are, I’m staying with
my child overnight.” Leaders learned that “there is no force in the world
stronger than a mother in their face advocating for her child.” In a dispute
between the hospital’s record and the mother’s record, one should believe
the mother’s—the only person taking care of the whole child. In 1996,
leaders at Dana-Farber Cancer Institute invited patients and family mem-
bers to populate all decision-making structures and processes in the orga-
nization (Ponte et al., 2003). In both organizations, after parents, patients,
and family members were invited into groups working on hospital design,
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108 PATIENTS CHARTING THE COURSE
TABLE 4-1 An Organizing Approach for Public Engagement
Location Examples
Environment Community, Region, Community groups
State Care Coordination, ACOs, Medical Homes
Advanced care planning, POLST, MOLST
School & church programs
Public health & other consumer campaigns
Organization Health System, Trust, Experience Surveys
Hospital, Nursing P&F councils, Advisors, Faculty
Home Resource centers, patient portals
Access to help and care 24/7
Medication lists
Micro-system Clinic, Ward, Unit, Parent, advisors, & advisory councils
ED, Delivery Open access, optimized flow
Family participation in rounding
Experience of care Bedside, Exam Room, Access to the chart
Home Shared care planning
“Smart Patients Ask Questions”
NOTE: ACOs = Accountable Care Organizations; MOLST = Medical Order for Life-Sustaining
Treatment; POLST = Physician Orders for Life-Sustaining Treatment.
Figure 4-1 plots these four levels against the elements of the Institute
for Family Centered Care’s definition of patient- and family-centered care.
Further threads of these elements are detailed under each that cut across all
levels. Each of the examples in Table 4-1 could then be layered on at the ap-
propriate intersections of Figure 4-1 to produce Figure 4-2. Although these
graphics are only a beginning, the possibilities emerge for aligning, building,
connecting, and evaluating. Informing this work will be advanced models of
thinking in other countries where population health, care transitions, and
community already have a much stronger role in health and health care
than they do in the United States today.
Moving Forward
In a study of patient/public engagement in Europe, Groen and col-
leagues (2009) note, “The widespread implementation of policies to ensure
patients’ rights, privacy, and confidentiality is noteworthy. Patient involve-
ment in quality improvement activities, on the other hand, so far appears
to be more a rhetorical exercise than a practice.” The same is the case for
the United States. What is needed to advance that agenda rapidly is clarity
of expectation: if health care is on the table, the public is at the table,
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ENGAGING PATIENTS TO IMPROVE SCIENCE AND VALUE
FIGURE 4-1 Public engagement level and dimensions: A rudimentary framework.
Figure 4-1.eps
bitmap
FIGURE 4-2 Figure 4-1 with examples at each level.
Figure 4-2.eps
bitmap
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110 PATIENTS CHARTING THE COURSE
every table; visionary leadership, experimentation, and innovation are re-
warded and incentivized; model frameworks for public engagement are
introduced; and the evidence base is disseminated and enhanced.
Finally, making patient engagement personal is essential to connect the
heart as well as the mind. The effort is about the care for everyone, for family
and friends as well as for the communities the system is privileged to serve.
COMMUNICATING WITH PATIENTS ABOUT THEIR
CONCERNS, EXPECTATIONS, AND PREFERENCES
Karen Sepucha, Ph.D.
Massachusetts General Hospital
Should I take this medication? Should I skip that screening test? Should
I tell my doctor about these new symptoms? Patients and providers need
to communicate in order to determine appropriate courses of action across
a range of health issues. A high-quality decision on testing or treatment
requires communication about the options and the potential good and bad
outcomes, as well as consideration of patients’ concerns, goals, expecta-
tions, and preferences for those outcomes. This paper highlights gaps in the
quality of medical decisions made in the United States, describes interven-
tions that have been shown to improve the quality of decisions, and reviews
some promising approaches to putting these interventions into practice.
The Quality of Medical Decisions in the United States
Some situations in medicine are fairly straightforward; there is a clear
diagnosis and a single best treatment or approach. This is the case when
there is considerable evidence of benefit with little evidence of harm. These
situations have been referred to as “effective care,” and communication with
patients has focused on convincing them to implement the proven approach
(Wennberg et al., 2007). Yet a surprising number of clinical situations are
not examples of effective care. Instead of one approach, there are multiple
options. Instead of clear evidence of benefit, there are limited or low-quality
data on efficacy. Instead of benefits clearly outweighing harms, there are
difficult trade-offs to be made. These kinds of situations are referred to as
“preference-sensitive” situations (Wennberg et al., 2007). In such cases,
the “best” option is determined not only by the medical evidence but also
by patients’ individual views. Many common medical decisions, such as
the treatment of lower back pain, osteoarthritis, breast and prostate can-
cers, and benign prostate and benign uterine conditions, are considered
preference-sensitive situations.
Preference-sensitive situations are not easy for patients or providers.
The burden of decision making is now added to the burden of illness. The
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ENGAGING PATIENTS TO IMPROVE SCIENCE AND VALUE
decision making is complicated because neither patient nor provider can
do it well alone. The patient needs the medical expertise of the provider,
which includes evidence about the options and the potential good and bad
outcomes. The physician needs the patient’s self-knowledge, which includes
the meaning of the illness and the potential treatments in the patient’s life,
as well as the patient’s motivation and confidence to implement the differ-
ent options. This information needs to be shared and then used to select
the option that will best meet the patient’s goals and needs (Charles et al.,
1999; Mulley, 1989). This interactive process has been termed “shared
decision making” and is necessary to ensure that patients get the treatment
they need and no less, and the treatment they want and no more (Science
Panel on Interactive Communication and Health, 1999).
How close is clinical practice to achieving a shared decision-making
process? The DECISIONS study provides some evidence for the quality
of common decisions across the United States. A nationally representative
telephone survey interviewed 3,010 adults about nine common medical
decisions on elective surgery (for back pain, knee/hip osteoarthritis, and
cataracts), cancer screening (for breast, colon, and prostate cancers),
and medication (for high blood pressure, high cholesterol, and depression).
Respondents reported on their involvement in the decision, their knowledge
of four to five key facts related to the decision, and their goals and concerns
(Zikmund-Fisher et al., 2010).
The key findings of the study raise questions about the quality of medi-
cal decisions and the amount of shared decision making in the United States
today. For the most part, respondents had very little knowledge about the
options available to them and the likely consequences of those options. For
seven of nine conditions, fewer than half of the respondents could answer
more than one knowledge question correctly (Fagerlin et al., 2010). For
example, only 17 percent of respondents who reported making a decision
about taking cholesterol medication could correctly identify its most com-
mon side effect. Most men who had made a decision about screening for
prostate cancer vastly overestimated the likelihood of dying of the disease,
believing the risk was 20 percent as opposed to the actual likelihood of
approximately 3 percent (Fagerlin et al., 2010). In other words, there is
substantial evidence that patients are not making informed decisions.
Shared decision making requires meaningful discussion among pro-
viders and patients about treatment options, including both pros and cons.
Respondents in the DECISIONS study were much more likely to report
that their providers discussed the reasons for undergoing a treatment or test
compared with the reasons for not doing so. In fact, respondents reported
discussing both the pros and cons less than half the time (Zikmund-Fisher
et al., 2010). Shared decision making also requires discussion of what is
most important to patients. Respondents reported that providers asked
them what they wanted only about half the time. This result varied by
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112 PATIENTS CHARTING THE COURSE
situation and ranged from 33 to 50 percent for cancer testing decisions to
64 to 80 percent for surgery decisions (Zikmund-Fisher et al., 2010). The
data suggest that communication about patients’ concerns and preferences
is variable, and often lacking.
Implications and Opportunities for Improvement
Not sharing accurate, complete information about options and likely
outcomes can lead to patients receiving the wrong treatment. Not asking
patients what is most important to them and using that information to
guide treatments also leads to patients receiving the wrong treatment. How
often does this happen? In a subset analysis of the Cochrane Collaborative
systematic review of decision aids focusing on decisions aids for elective
surgery, informed patients were 25 percent less likely to choose surgery
compared with controls (O’Connor et al., 2007a). That finding suggests
that one in four patients going to the operating room may be receiving the
wrong treatment—surgery they would not have chosen if they had been
informed and if providers had listened to them. The patient safety and
resource implications of these findings are significant.
How can these gaps in the quality of decisions be filled? Three main
approaches have been used to promote shared decision making—provider
training, patient coaching and question checklists, and patient decision aids.
Provider Training
Provider training focuses on teaching communication skills and deci-
sion coaching skills (for example, risk communication) using a variety of
teaching methods. Coulter and Ellins (2006) summarize results from several
systematic reviews of provider training in communication skills and con-
clude that most training programs have a positive impact on both provider
communication behaviors and patients’ knowledge and satisfaction. How-
ever, there was mixed evidence of an impact on patient health outcomes and
utilization of services (e.g., a positive impact on medication adherence but
no impact on diabetes outcomes) (Coulter and Ellins, 2006).
Patient Coaching and Question Checklists
Patient coaching and question checklists, typically administered in ad-
vance of the visit, are designed to help patients communicate with providers
and may promote shared decision making. A Cochrane systematic review
of 33 randomized controlled trials of these interventions found that they
produced a modest impact on patient outcomes (Kinnersley et al., 2007).
In the Cochrane meta-analysis, the interventions were shown to increase
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ENGAGING PATIENTS TO IMPROVE SCIENCE AND VALUE
the number of questions patients asked, as well as patient satisfaction. The
meta-analysis did not find a statistically significant change in patient anxiety
or knowledge or in length of consultation.
Patient Decision Aids
Decision aids are tools that provide balanced information on options
and outcomes and help patients think through their values and what is
most important to them before making a decision. The International Pa-
tient Decision Aids Standards (IPDAS) Collaboration is an international
group of researchers, clinicians, consumers, and policy makers created to
set standards for the development, organization, and content of decision
aids (Elwyn et al., 2006). The tools are available in a variety of media, and
researchers at the University of Ottawa maintain a library of decision aids
that is available online (OHRI, 2010).
There have been more than 55 randomized controlled trials of patient
decision aids. A Cochrane systematic review of these studies found that
these tools increase patients’ knowledge, the accuracy of their risk percep-
tions, and their desire to participate in decisions (O’Connor et al., 2007a).
The tools also help those who are undecided to make a choice, and to do
so without increasing anxiety. As mentioned earlier, subgroup analysis
of trials comparing elective surgery with nonsurgical options found a 25
percent decrease in use of surgery for those exposed to a decision aid. Of
course, the goal of decision aids is not to increase or decrease utilization,
but to increase the proportion of patients who are matched to the right
treatment for them.
Many decision aids are widely available, although their use is not
common. A few organizations and researchers have made significant, sus-
tained investments in developing and disseminating patient decision aids.
Three companies that have developed many of these tools are Healthwise,
Inc., Health Dialog, Inc., and the Foundation for Informed Medical Deci-
sion Making. Researchers at Ottawa Health Research Institute, McMaster
University, and the University of Wisconsin have also developed patient
decision aids. Commercial entities disseminate decision support via a health
coaching model implemented through a call center at the health plan level
(e.g., Health Dialog) and Internet-based models that deliver decision aids
directly to consumers (e.g., Healthwise via WebMD) (O’Connor et al.,
2007b).
Experience with the implementation of decision aids at the provider
level in the United States is coming largely from demonstration projects
and learning collaboratives, several of which are funded by the Founda-
tion for Informed Medical Decision Making. The Breast Cancer Initiative
has found significant interest in and sustained use of breast cancer deci-
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114 PATIENTS CHARTING THE COURSE
sions aids among both community and academic cancer centers (Silvia et
al., 2008). Massachusetts General Hospital has launched an “ePrescribe”
project that gives primary care physicians the capability to prescribe deci-
sion aids electronically. Dartmouth Hitchcock Medical Center (DHMC) has
integrated decision aids into primary and specialty care and seen significant
success in their ability to reach patients. The use of decision aids at DHMC
has resulted in improved patient knowledge and increased ability to tailor
treatments to patients’ goals (Collins et al., 2009).
Shared Decision Making and Clinical Practice
What is needed to support patients and providers in making the changes
required to integrate shared decision making into routine clinical care? Re-
peatedly it has been shown that organizational change seldom occurs unless
the desired performance is routinely measured. This suggests that if there
were a way to document the gaps between routine care and the knowledge-
based and patient-centered ideal, it might stimulate changes in provider and
patient behavior.
Systematically documenting the large gaps in decision quality could
generate significant demand for tools and approaches such as decision
aids (Sepucha et al., 2004). This documentation would require rigorous
and practical survey instruments that could capture the gaps in patients’
understanding and highlight the numerous instances in which patients
received care they did not want or need (Sepucha et al., 2004). Fostering
competition among hospitals and practices in how well they inform their
patients and how attentive they are to their patients’ preferences could lead
to substantial improvements in the quality of health care. In fact, the recent
healthcare reform legislation calls for the development of quality measures,
including those focused on decision quality, as well as for the development
of certification for decision aids and other tools designed to promote shared
decision making.
Conclusion
In summary, the data show much variability in the quality of medical
decisions. Too often patients are not meaningfully involved or well in-
formed, and their goals and concerns are not taken into account. Decision
aids are effective tools that promote shared decision making and have been
integrated successfully into routine clinical care. Shared decision making,
which requires productive communication between healthcare providers
and patients about the evidence and their concerns and preferences, is a
critical foundation for a learning health system.
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