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At the Intersection of Health, Health Care and Policy
doi: 10.1377/hlthaff.2012.1061
, 32, no.2 (2013):207-214Health Affairs
Care Experiences; Fewer Data On Costs
What The Evidence Shows About Patient Activation: Better Health Outcomes And
Judith H. Hibbard and Jessica Greene
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By Judith H. Hibbard and Jessica Greene
What The Evidence Shows About
Patient Activation: Better Health
Outcomes And Care Experiences;
Fewer Data On Costs
ABSTRACT
Patient engagement is an increasingly important component of
strategies to reform health care. In this article we review the available
evidence of the contribution that patient activation—the skills and
confidence that equip patients to become actively engaged in their health
care—makes to health outcomes, costs, and patient experience. There is a
growing body of evidence showing that patients who are more activated
have better health outcomes and care experiences, but there is limited
evidence to date about the impact on costs. Emerging evidence indicates
that interventions that tailor support to the individual’s level of
activation, and that build skills and confidence, are effective in increasing
patient activation. Furthermore, patients who start at the lowest
activation levels tend to increase the most. We conclude that policies and
interventions aimed at strengthening patients’role in managing their
health care can contribute to improved outcomes and that patient
activation can—and should—be measured as an intermediate outcome of
care that is linked to improved outcomes.
The Affordable Care Act recognizes
that engaging patients in their own
care is a cornerstone of successful
health system reform and is critical
to the success of accountable care
organizations and patient-centered medical
homes. A growing body of evidence links pa-
tients’activation levels to their health and cost
outcomes. In this article we review evidence of
the contribution that patient activation makes to
health outcomes, costs, and patients’experienc-
es of care.
The terms patient engagement and patient acti-
vation are often used interchangeably. The terms
are also frequently used to convey different
meanings or are poorly defined.
Patient activation emphasizes patients’willing-
ness and ability to take independent actions to
manage their health and care. We use the defi-
nition developed by an author of this article,
Judith Hibbard, and colleagues. This definition
equates patient activation with understanding
one’s role in the care process and having the
knowledge, skill, and confidence to manage
one’s health and health care.1Activation differs
from compliance, in which the emphasis is on
getting patients to follow medical advice.
We use patient engagement to denote a broader
concept that includes activation; the interven-
tions designed to increase activation; and pa-
tients’resulting behavior, such as obtaining pre-
ventive care or engaging in regular physical
exercise. The focus on activation and engage-
ment rather than compliance recognizes that
patients manage their health on their own the
vast majority of the time, making decisions daily
that affect their health and costs.
The evidence linking patient activation with
health outcomes, patient experience, and costs
has grown substantially over the past decade.
Besides reviewing the strength of that evidence,
we identify important research gaps and address
doi: 10.1377/hlthaff.2012.1061
HEALTH AFFAIRS 32,
NO. 2 (2013): 207–214
©2013 Project HOPE—
The People-to-People Health
Foundation, Inc.
Judith H. Hibbard (jhibbard@
uoregon.edu) is a senior
researcher at the Health
Policy Research Group,
Institute for Sustainable
Environments, and a professor
emerita in the Department of
Planning, Public Policy, and
Management, all at the
University of Oregon, in
Eugene.
Jessica Greene is a professor
and director of research at
theGeorgeWashington
University School of Nursing,
in Washington, D.C.
FEBRUARY 2013 32:2 Health Affairs 207
Evidence
&
Potential
by JUDITH HIBBARD on February 4, 2013Health Affairs by content.healthaffairs.orgDownloaded from
two key policy questions: What are effective strat-
egies for activating patients? And can patients
who are disengaged and not activated become
activated?
In this review we include studies that quantify
patient activation using the Patient Activation
Measure and that link activation levels to health
outcomes, costs, and patients’experiences of
care. The Patient Activation Measure is a so-
called latent construct—a variable that can’tbe
measured directly but instead is assessed
through a series of answers to questions—that
gauges a person’s self-concept as a manager of
his or her health and health care. The measure is
scored on a 0–100 scale, and people are catego-
rized into four levels of activation, with level 1
the least activated and level 4 the most activated.
The score incorporates responses to thirteen
statements about beliefs, confidence in manag-
ing health-related tasks, and self-assessed
knowledge. Examples include the following: “I
am confident that I can tell whether I need to
go to the doctor or whether I can take care of a
health problem myself”;“I know what treat-
ments are available for my health problems”;
and “I am confident that I can tell a doctor
my concerns, even when he or she does not
ask.”Responses are degrees of agreement or
disagreement.
The measure has been proved to be reliable
and valid across different languages, cultures,
demographic groups, and health statuses.1–7
Evidence Of Better Health Outcomes
Multiple domestic and international studies
have empirically demonstrated that people
who score higher on the Patient Activation
Measure are significantly more likely than peo-
ple who score lower to engage in preventive
behavior such as having regular check-ups,
screenings, and immunizations. More highly
activated people are also significantly more
likely to engage in healthy behavior such as eat-
ing a healthy diet and getting regular exercise.
Moreover, those who score higher are more
likely to avoid health-damaging behavior such
as smoking and illegal drug use.1,2,8–15
Less activated patients are also three times as
likely to have unmet medical needs and twice as
likely to delay medical care, compared with more
activated patients.13 Highly activated patients are
two or more times as likely as those with low
activation levels to prepare questions for a visit
to the doctor; to know about treatment guide-
lines for their condition; and to seek out health
information, including comparisons of the qual-
ity of health care providers.10,16
Chronically ill patients with higher activation
levels are more likely than those with lower levels
to adhere to treatment; perform regular self-
monitoring at home; and obtain regular chronic
care, such as foot exams for diabetes.2,8,9,11,12,17–25
These findings stem from studies of patients
with a range of conditions and economic
backgrounds.
For example, Kimberly Rask and colleagues
followed patients with diabetes from an inner-
city public hospital clinic over a six-month
period and found that patients with higher acti-
vation scores were more likely to perform foot
checks, obtain eye examinations, and exercise
regularly, compared to patients who scored
lower on this measure.19 In a study of patients
with serious mental illnesses, Michelle Salyers
and colleagues found that higher Patient
Activation Measure scores were positively re-
lated to patients’management of their own ill-
ness and were negatively related to substance
abuse.15
Two studies tracked how changes in Patient
Activation Measure scores over time were related
to subsequent behavior changes. First, Hibbard
and coauthors followed patients with one or
more chronic diseases over a six-month period.9
Increases in Patient Activation Measure scores
were linked to improvements in eleven of eight-
een actions, including regular exercising and
keeping a blood glucose diary. Lisa Harvey and
colleagues reported similar results among em-
ployees: When Patient Activation Measure scores
increased, multiple behaviors improved, regard-
less of the employees’activation level at
baseline.26
In addition to the documented linkages be-
tween activation and healthy behavior, activa-
tion has been shown to be associated with better
health outcomes. Several studies have reported
that patients with higher activation scores are
more likely than patients with lower scores to
have biometrics such as body mass index, hemo-
globin A1c, blood pressure, and cholesterol in
the normal range.8,17,25,27,28
These findings, from both cross-sectional and
prospective studies, were significant even after
sociodemographic factors, disease severity, and
insurance status were controlled for. Moreover,
many of these findings have been reported
within disadvantaged, ethnically diverse, and
medically indigent populations.19,29–33
Patient activation has also been linked to out-
comes among patients with many different types
of health conditions.11,14,15,31,34–40 In addition,
many of the findings have been replicated in
studies conducted in different countries, includ-
ing Denmark, Germany, the United Kingdom,
Japan, Norway, Canada, the Netherlands, and
Australia.3–7,20,36
Evidence
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Evidence Of Better Health Care
Experiences
Several studies have documented that more
highly activated patients consistently report
more positive care experiences.1,11,41–44 Jeffrey
Alexander and colleagues found that patients’
reports of higher-quality interpersonal ex-
changes with physicians, greater fairness, and
more out-of-office contact with physicians
were associated with higher patient activation
scores.41 Daniel Maeng and coauthors found that
patients with higher scores and one or more
chronic disease reported fewer problems with
care coordination than did patients with lower
scores.42
Most of the studies looking at patient activa-
tion and patient experience are cross-sectional,
which makes it impossible to know the direction
of causality. However, new evidence suggests
that highly activated patients report better care
experiences from a given provider than do less
activated patients who see the same provider.44
Highly activated patients may have the skills and
confidence to elicit what they need from their
providers.
These findings suggest that patient expe-
rience scores, such as those on the Consumer
Assessment of Healthcare Providers and Systems
survey, may be a reflection of a transaction that is
shaped by both the clinician and the patient and
is not just a measure of provider performance.44
Evidence Of Lower Health Care Costs
Several studies have reported that after disease
severity and demographic characteristics were
controlled for, highly activated patients had
lower rates of costly use such as hospitalizations
and emergency department visits, compared to
less activated patients.8,25,36,45 In a study of more
than 25,000 patients in a large delivery system
in Minnesota, we found that for every additional
ten points on a Patient Activation Measure score,
the predicted probability of having an emergency
department visit was one percentage point
lower.8The study controlled for health and dem-
ographic factors.
In this month’sHealth Affairs, we and Valerie
Overton publish the first study that specifically
examined patient activation and cost of care.46
We found that Patient Activation Measure scores
were predictive of the same year’s and the next
year’s billed costs of care, with less activated
patients having significantly higher costs than
more activated patients.
Evidence Of The Ability To Increase
Activation Levels
Evaluations of interventions to increase patient
activation have been carried out in a variety of
settings: the workplace,29 hospitals,47 disease
management programs,48 the community,22,49–51
and primary care.29,52 These studies include
publicly and privately insured populations and
patients with various health conditions.
Interventions ranged in duration from just one
visit to periods of six months.
All of these studies have documented improve-
ments in activation scores as a result of the in-
tervention being tested. On average, improve-
ments ranged from 2.5 to 6.5 points on the
100-point activation scale. Concurrent with the
increases in activation, several of the studies
have shown improvements in health outcomes,
including health-related quality of life; clinical
indicators, such as low-density lipoprotein and
blood pressure; adherence to treatment; im-
proved health-related behavior; increased par-
ticipation in care; and reduced symptoms, hos-
pital readmissions, overnight hospital stays, and
use of the emergency department.22,28,29,47–52
The studies vary in their sample sizes and de-
gree of rigor. However, collectively they help
identify the types of interventions that yield in-
creases in activation.
Interventions shown to increase activation
have one or more of the following focuses.
Skill Development, Problem Solving, And
Peer Support A good example of this type of
intervention is Kate Lorig’s diabetes self-man-
agement program, which uses trained lay leaders
in community settings to facilitate workshops
aimed at helping chronically ill patients handle
problems better, engage in appropriate exercise,
and communicate with providers. The program
is community based and is typically not linked
to any delivery system. Participants have
demonstrated increases in activation that have
been sustained for up to twelve months after
participation.50
Benjamin Druss and colleagues adapted the
self-management program to patients with seri-
ous mental illnesses and tested it in a controlled
trial.22 At the six-month follow-up, participants
in the intervention group had significantly
greater improvements in patient activation than
those in usual care, along with greater improve-
ments in adherence, physical activity, and qual-
ity of life.
Two studies carried out in safety-net clinics
that focused on skills development, such as
question formulation, have been shown to in-
crease patients’skills, participation in care,
and activation levels.29,52
A quasi-experimental study conducted in
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senior centers evaluated an intervention that fo-
cused on peer support and the development of
self-management skills such as condition mon-
itoring and increasing physical activity.51 The
intervention focused on the importance of tak-
ing an active role in managing one’s conditions
and offered specific strategies for doing so.
Participants’Patient Activation Measure scores
and physical activity increased, and their quality-
of-life scores and health status had improved at a
six-month follow-up.
Michael Parchman and colleagues showed
that the baseline Patient Activation Measure
scores of patients with diabetes had improved
at a one-year follow-up, when the patients en-
gaged in participatory decision making with pro-
viders.53 Further Patient Activation Measure
score improvements were associated with in-
creases in medication adherence and levels of
HbA1c and low-density lipoprotein cholesterol.
Changing The Social Environment These
interventions seek to change the social environ-
ment to facilitate people’s changes in beliefs,
social norms, skills, and opportunities to engage
in healthy behavior. In an experiment involving
two large companies, employees were randomly
assigned to a control group or to a group receiv-
ing one of two different workplace interventions
focusing on wellness or being an informed
health care consumer. Although the two inter-
vention arms emphasized different issues, both
included health classes, environmental changes
such as posters and information campaigns, and
personal coaching for high-risk employees. The
findings showed that people receiving either of
the interventions significantly increased their
activation, by an average of five points.28
Tailoring Support To The Person’s
Activation Level The goal of tailored coaching
is to encourage people to take actions at which
they are likely to succeed. Participants who are
less activated are encouraged to take small, man-
ageable steps; those who are more activated are
encouraged to make more substantial behavioral
changes.
In a small study, Martha Shively and col-
leagues randomly assigned patients with heart
failure to a group receiving usual care only or a
group given tailored coaching along with their
medical care.45 The coaching was designed to
help patients develop self-management skills,
with the level of intensity tailored to the patient’s
level of activation. The researchers found greater
increases in activation scores and greater corre-
sponding decreases in hospitalization for the
intervention group, compared to the group re-
ceiving usual care alone. Notably, the decreases
in hospitalization among the intervention group
were observed whether participants’baseline
activation scores were high or low.
In a quasi-experimental study conducted in a
disease management program, coaches tailored
support to the patients’Patient Activation
Measure scores.48 Coaches encouraged patients
to make changes that they were likely to succeed
at, starting the less activated patients with
smaller steps. The findings showed significant
improvements over the course of six months in
activation scores; adherence to treatment; clini-
cal indicators, such as blood pressure and low-
density lipoprotein levels; and reductions in
emergency department use and hospitaliza-
tions, compared to patients in the control group
who received usual coaching, with no tailoring
according to patients’activation level.
One interesting finding from the intervention
studies was that patients who started at the low-
est activation levels tended to increase their
Patient Activation Measure scores the most.
This result may partly be a ceiling effect—that
is, the patients who began with high scores had
less room to improve—but it is encouraging that
an effective intervention can activate patients
who were previously passive.48,51,52
Overall, interventions that tailor support to
the person’s level of activation, build skills and
confidence, use peer support, and change the
social environment have a positive impact on
activation as well as other outcomes.
Although there is a growing body of interven-
tion studies investigating different population
groups and conditions, many limitations and
gaps remain. There is a need to expand the evi-
dence base about the efficacy of different strat-
egies in different settings. And although it
appears that several different types of interven-
tions are effective, there is no indication which
are most effective or which will work best with
specific patient populations. More controlled tri-
als are needed to develop this evidence base.
Studies are starting to emerge that look at the
impact of web-based interventions or portals on
patient activation. The results are encouraging,
but more research is needed in this area.54–57 Also,
although less activated people appear to benefit
from interventions, they are less likely than
others to participate in them in the first place.57
Research is needed to identify strategies that
increase the participation of less activated
patients.
The Patient Activation Measure
In Innovative Delivery Systems
Innovative delivery systems are measuring acti-
vation to improve and individualize patient care
and to strengthen the patient’s role in improving
outcomes. They are improving care principally
Evidence
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by tailoring coaching, education, and care pro-
tocols to patients at different levels of activation.
Delivery systems are also making more efficient
use of their resources by providing more support
to patients who have a heavy disease burden and
limited self-management skills (less activated
patients), and less support to patients with
greater skills.
For example, Fairview Health Services in
Minnesota—a large not-for-profit health care
system with forty-one primary care clinics, spe-
cialty care clinics, and hospitals—routinely col-
lects Patient Activation Measure data as part of
primary care. Fairview is also participating in the
Centers for Medicare and Medicaid Services’
Pioneer Accountable Care Organization model.
The patient activation data are collected by
Fairview’s front-office staff in the waiting room
or by medical assistants in the exam room. The
resulting activation score is then entered into the
patient’s electronic health record. Fairview is
also laying the groundwork for collecting
Patient Activation Measure data online via the
patient portal, known as MyChart, in the EPIC
electronic health record system.
Within Fairview, the Patient Activation
Measure is increasingly viewed as a vital sign
that is key to individualizing patients’care
plans. Fairview’s clinicians are being trained to
use motivational interviewing to help match
patients’care plans to activation levels.
Additionally, Fairview is using the Patient
Activation Measure score to reduce hospital re-
admissions. The health system also uses the
score when patients are discharged to tailor
the type and amount of support provided to pa-
tients at that stage. By targeting extra support to
people with the weakest self-management skills,
and providing less support to those with ad-
equate self-management skills, the Fairview staff
is seeking to reduce readmissions with fewer
resources.
Another example is the Courage Center in
Minnesota, the recent winner of an innovation
grant from the Centers for Medicare and
Medicaid Services. The Courage Center provides
a patient-centered medical home for patients—
many of them eligible for both Medicare and
Medicaid—with complex chronic illnesses or dis-
abilities. The patients have high rates of expen-
sive utilization, averaging 10.8 hospital days per
year. With careful management and responsive
clinicians, the center has been able to increase
Patient Activation Measure scores seven points
on average, over roughly twelve months. It
has also reduced hospital days by 71 percent,
to 3.1 days per year—a significant change. By
helping patients prevent crises, the center gives
patients a greater sense of control over their
situation.
One strategy the center uses is to have the
Patient Activation Measure score drive care pro-
tocols. For example, when a patient with a low
activation score calls the center, the staff ad-
dresses the patient’s needs by marshaling the
necessary resources, including medications or
medical advice, before the call concludes. This
strategy is based on the assumption that less
activated patients are less likely than others to
call back and follow up on additional unresolved
problems that could lead to hospitalizations
(Nancy Flinn, Courage Center, personal commu-
nication, October 3, 2012).
And in the Pacific Northwest, the PeaceHealth
system’s patient-centered medical homes use
Patient Activation Measure scores in combina-
tion with information on disease burden to
match care to patients’needs.58 This approach
takes into account patients’clinical profiles as
well as their ability to manage their health.
Patients with greater disease burden and lower
Patient Activation Measure scores are matched
with more highly skilled clinical team members.
For example, a patient with the lowest level of
activation and the highest disease burden would
be matched with a physician and a registered
nurse. A patient with the highest level of activa-
tion and the lowest disease burden would be
matched with a peer support group.
Fairview Health Services, the Courage Center,
and PeaceHealth are examples of innovative or-
ganizations that are using their existing quality
improvement infrastructure—electronic health
records and information systems, team-based
care, and population-based care—in a more tar-
geted way to support patients and personalize
care. These organizations believe that their in-
vestment in patient engagement will pay off in
better health outcomes, better experiences for
patients, and lower costs. The extent to which
these approaches can be adapted to other care
settings will depend, in part, on health care or-
ganizations’existing infrastructure and their
ability to capitalize on that infrastructure.
Discussion
The research shows that more activated patients
have better health outcomes and better care
experiences than patients who are less acti-
vated.25–27 Studies also show that activation can
be modified and increased over time—and that
certain interventions are effective in increasing
activation.45,48–53 This has been shown with med-
ically indigent patients, different racial and eth-
nic groups, and patients with multiple chronic
conditions.
These findings highlight the contribution that
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patient activation makes to health outcomes and
patients’experiences with care. More research is
needed to understand the contribution that it
may make in terms of health care costs.
Results suggest that increasing patient engage-
ment may be an important element in strategies
designed to reach the so-called Triple Aim59 of
health care reform: better individual and popu-
lation health and lower costs.
The results also point to the need for a system-
atic approach in encouraging patients to play a
more active role. It is important to integrate pa-
tient engagement strategies into all efforts to
improve the effectiveness and efficiency of care.
Innovative delivery systems, such as those de-
scribed above, are including patients as part of
the solution, recognizing that high-quality care
should help patients gain the skills, confidence,
and knowledge they need to manage their health.
The emerging evidence suggests a potentially
new quality goal: increasing patient activation
as an intermediate outcome of care that is meas-
urable and linked with improved outcomes.
Quality improvement efforts that systematically
work to expand the patient’s (and the family’s)
ability to participate in care are a pathway toward
improving outcomes. Such an approach is both
necessary and achievable. ▪
Judith Hibbard is an equity stakeholder
in and consultant to Insignia Health.
NOTES
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FEBRUARY 2013 32:2 Health Affairs 213
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ABOUT THE AUTHORS: JUDITH H. HIBBARD
&
JESSICA GREENE
Judith H. Hibbard is
a professor emerita
at the University of
Oregon.
In this month’sHealth Affairs,
Judith Hibbard and Jessica Greene
assess the evidence on the effects
of “patient activation”—the skills
and confidence that equip patients
to become actively engaged in their
health care. The authors cite a
growing body of evidence showing
that patients who are more
activated have better health
outcomes and care experiences, but
they also find that there is limited
evidence to date about the impact
on costs. Arguing for more
research to buttress this evidence,
they recommend that patient
activation be broadly assessed as
an intermediate outcome linked to
improved health outcomes over
time.
Hibbard is a professor emerita in
the Department of Planning, Public
Policy, and Management and a
senior researcher at the Health
Policy Research Group, Institute
for Sustainable Environments, all
at the University of Oregon. Over
thepasttwenty-eightyears,
Hibbard has focused her research
on consumer choices and behavior,
with a particular emphasis on
testing approaches that give
consumers and patients more
knowledge and control over their
health and health care. Hibbard’s
studies examine such topics as how
consumers understand and use
health care information, how
health literacy affects choices, and
assessments of patient
engagement.
Hibbard holds a master’sdegree
in public health from the
University of California, Los
Angeles, and a doctorate in social
and administrative health sciences
from the University of California,
Berkeley.
Jessica Greene is a
professor and
director of research
at the George
Washington
University School
of Nursing.
Greene is a professor and
director of research at the George
Washington University School of
Nursing. She focuses on evaluating
health policies and strategies for
improving quality of care. Greene
also serves as principal investigator
in a study—funded by the
Commonwealth Fund—of how a
health system uses an innovative
physician compensation model to
drive improvements in care
delivery, and as co–principal
investigator of another study—
funded by the Gordon and Betty
Moore Foundation—of changes in
patient activation over time.
In addition, Greene serves as an
advisory board member for Medical
Care Research and Review. She holds
master’s degrees in public health
and international affairs from
Columbia University and earned a
doctorate in public administration
from New York University.
Evidence
&
Potential
214 Health Affairs FEBRUARY 2013 32:2
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