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6
Patients, Clinical Decisions, and
Health Information Management
in the Information Age
INTRODUCTION
Until recently, health care was characterized by an information asym-
metry in which physicians served as the dominant source of medical in-
formation for patients. The Internet has rapidly transformed the health
information landscape—initially opening up myriad resources, targeted to
the general public, for health-related guidance and information, and then,
with the emergence of Web 2.0, enabling the public to easily create and
share health-related content online. Patients have responded to this shift
by increasingly seeking health-related information outside of the care en-
vironment (Fox and Jones, 2009) and creating and contributing to a wide
variety of social networks and health websites (Sarasohn-Kahn, 2008).
Perhaps the most important opportunity that comes with greater informa-
tion availability is the emergence of a culture that recognizes and supports
the unique contributions of both patients and providers to care decisions
and health management.
Such a shift moves patient-centered care beyond a focus on “informa-
tion, communication, and education of patients” (IOM, 2001) to a system
in which patients are engaged as full partners in their care and disease
management. Greater engagement of patients is imperative, with more
than 90 million Americans now being afflicted with one or more chronic
conditions. Chronic disease management, for example, requires continuous
monitoring and evaluation of disease progression and treatment effects,
coordination of care across specialists and organizations, and patient adher-
ence to long-term treatment regimens. Another tool for achieving patient
137
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138 PATIENTS CHARTING THE COURSE
engagement is through electronic health records (EHRs) and patient portals,
which are beginning to be adopted nationwide as novel ways for providers
to partner with patients by providing information and support for care
management.
The papers in this chapter review lessons learned from efforts to sup-
port the active engagement of patients in their healthcare decisions and
health management and identify priorities and strategies for progress. In
the first paper, George D. Lundberg of Cancer Commons provides an over-
view of the Internet revolution, which has democratized information. He
reviews opportunities to improve the information available to or accessed
by patients, as well as to use the Internet as a platform to engage patients
in real-time, rapid learning communities.
In the second paper, Paul C. Tang of the Palo Alto Medical Foundation
demonstrates the critical importance of engaging patients in their own care
to close gaps in health outcomes and system performance. He reviews how
information technology applications such as patient dashboards has helped
make patients part of the health team, fostered patient and provider col-
laboration in tracking progress toward health goals, and provided tools to
transform data into information from which patients can learn.
Dorianne C. Miller, formerly of the University of Chicago Medical
Center, draws attention to initiatives that are helping to extend health care
to settings outside of the clinical encounter. Shifts in patient population
demographics and in the focus and capacity of health systems are driving
the creation of applications to ensure that patients receive care (e.g., patient
health records and portals, e-visits) and support beyond the traditional
care environment. In addition to highlighting opportunities, she discusses
barriers to expanded use of such technologies, such as social acceptability,
lack of Internet access, and clinician reimbursement.
PUBLIC AND PATIENT INFORMATION ACCESS
AND USE AS A CORE CARE COMPONENT
George D. Lundberg, M.D.
Cancer Commons
Change is everywhere and affects everyone. People handle change in
three different ways:
• Fear it; fight it; not recognize that change is inevitable; lose.
• Fail to recognize the need for and reality of change and be swept
away by it.
• Seek it; recognize it; harness it; guide it; and eventually win with it.
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PATIENTS, DECISIONS, AND HEALTH INFORMATION MANAGEMENT
The future is very difficult to predict; in fact, the only certain way
to predict the future is to create it. Change for the sake of change may
not be necessary or desirable. Too often, however, the need for change
is not evident until it is too late.
The Democratization of Information
Three individuals merit mention when one is discussing information as
a core component of care: the late Archie Cochrane, for his demand that
evidence underpin clinical decisions; the late Dr. Tom Ferguson, the original
e-patient, who was in many ways the father of participatory medicine and
use of the Internet to empower patients; and Don Berwick, who has been
a major leader in patient-centered care.
Most health care is self-care. In some ways, basic self-screening for
health concerns is a routine part of everyday life; however, people should be
better supported in taking charge of their health. Moreover, all medical care
is personal. The credo of the Lundberg Institute states: “one patient; one
physician; one moment; one decision.”1 Health decisions should be shared
by the patient and physician, be informed by the best available evidence,
and include consideration of cost (regardless of who—the patient, the in-
surance company, the government, the provider [charity care]—pays the
bill) and of whether there is a lower-cost alternative with equivalent safety
and effectiveness. That is economic informed consent. In a nonemergency,
noncritical care situation in which the patient has control of his/her mental
faculties, the patient and physician should know the cost before making an
informed decision.
The Internet changed everything, much as electricity did. Health in-
formation began appearing on the Internet in the mid-1990s. Physicians
On-Line began in 1994, Medscape in May 1995, and the American Medi-
cal Association (AMA) website with the Journal of the American Medical
Association (JAMA) and the Archives Journals in August 1995. In 1995,
e-Medicine began. About that time, GlaxoWellcome provided a $250,000
grant to AMA to start an HIV/AIDS online information base with JAMA.
Initially, this resource was aimed at sophisticated HIV researchers and
physicians, but the actual audience was HIV patients and their families,
loved ones, and caregivers. This illustrates the principle that more than any
other medium, the Internet democratizes information. The reader really
does choose.
1 See http://www.lundberginstitute.org (accessed October 14, 2010).
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140 PATIENTS CHARTING THE COURSE
Caveat Lector
Consumer choice, however, raises concerns about misinformation. In
1997, an editorial in JAMA addressed this issue (Silberg et al., 1997). Titled
“Assessing, Controlling, and Assuring the Quality of Medical Information
on the Internet. Caveat Lector et Viewor—Let the Reader and the Viewer
Beware,” the article outlines key questions that readers should ask about
any serious information on health and medicine posted on the web:
• Who wrote this?
• Where does that person work?
• If the information comes from elsewhere, what is its attribution;
when was it published?
• If it was updated, when?
• Who owns the site where the article is published, and what is the
funding source?
This editorial is frequently cited, and these criteria have had some in-
fluence as a result of being widely quoted and applied in practice by many
publishers, editors, and authors. However, these caveats are routinely ig-
nored by readers who consume whatever information search engines lead
them to. Readers seek out trusted brands and return to sites they perceive
to have helped them; thus, it is an information provider’s responsibility not
to mislead the reader.
Although many dismiss the Internet because so much of the informa-
tion is suspect or worthless, the same is true of most media. The web is
simply another medium, albeit a very powerful one.
Ensuring Open Access to Quality Information
Patients and consumers, like physicians, now receive most of their new
medical and health information from the Internet (Fox and Jones, 2009).
In many cases, patients receive more health information from the Internet
than from their own physicians (Gualtieri, 2009). Typically, instead of
bringing their printouts to their physician’s office, patients log on after
seeing their physician to check on findings, diagnoses, and diagnostic tests
performed and drugs prescribed (Diaz et al., 2002). These searches likely
start with the few details the patient remembers from the provider visit.
Usually, the patient starts with a general search engine, most likely Google,
Yahoo, or Bing. Given this common practice, the information age presents
an enormous opportunity for savvy physicians to deliver an “information
prescription” to patients who are motivated to learn and have access to the
world’s greatest library at their fingertips.
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PATIENTS, DECISIONS, AND HEALTH INFORMATION MANAGEMENT
An informal survey of which medical/health websites provide the most
consumer-friendly and useful information on cancer identified the following
as key resources for patients:
• www.cancer.gov (National Cancer Institute website)
• www.pubmed.gov (Medline Plus)
• www.cancer.org (American Cancer Society website)
• A tie between www.webmd.com, www.mayoclinic.com, and www.
wikipedia.com
• www.nccn.org (National Comprehensive Cancer Network website)
• www.intelihealth.com (Harvard Medical School and Aetna website)
• www.ACOR.org (Association of Cancer Online Resources website)
• www.cancer.net (American Society of Clinical Oncology website)
Additional suggestions for new websites that are interesting and useful
for consumers include www.keas.com and www.medhelp.com; addition-
ally, although intended for medical professionals, www.medscape.com,
www.medpagetoday.com, and www.emedicine.com are all very useful for
patients. All of these sources are open access—available to anyone with
access to the Internet, free of charge, and usually without user registration
requirements.
The deliberate practice of limiting the flow of medical information on
the part of most of the medical publishing industry compromises the pub-
lic interest. Although most new medical information in the United States
emanates from tax-supported research, such as that funded by the National
Institutes of Health, the authors of papers reporting the results of such
studies still overwhelmingly choose to submit the papers to journals owned
by those that are, or function as, for-profit publishers. The taxpayers, who
own the information by virtue of having paid for it, are therefore impeded
by these publishers from using the data to treat (if a physician) or be treated
(if a patient). As much as 90 percent of the medical research literature is
still provided by such “closed” sources.
The case for the unfairness of this situation has been made since about
1999 and has led to great progress in creating more open-access sources.
Leaders in this field include www.pubmedcentral.gov, www.biomedcen-
tral.com, the Public Library of Science/Medicine, the Medscape Journal
of Medicine (1999–2009), Medscape’s Publishers Circle, Lund University
Library’s Directory of Open Access Journals, the Cochrane Collaboration
(easily available through MedPage Today), and the Effective Care Program
of the Agency for Healthcare Research and Quality.
Many believe that the single greatest barrier to successful public ac-
cess to and use of medical information as a core care component is the
general lack of reliable information sources in the traditional public media
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142 PATIENTS CHARTING THE COURSE
(e.g., newspapers, magazines, radio, and television—all major information
sources for patients) (Schwitzer et al., 2005). Gary Schwitzer, a professor
of journalism at the University of Minnesota, publishes www.healthnews-
review.org, which weekly rates the handling of major health-related news
stories. He uses ten criteria to assess the quality of these reports. Did the
news report:
• establish the availability of the treatment, test, product or procedure;
• address costs;
• avoid disease-related fear mongering;
• evaluate the quality of evidence;
• quantify potential harm;
• establish the true novelty of the treatment, test, product, or
procedure;
• quantify potential benefits;
• rely solely or largely on a press release;
• use independent sources and report conflicts of interest; and
• compare the new approach with existing alternatives?
Major medical and health reports emerge every day, but few receive
passing grades in the Schwitzer reviews. Network television reports are con-
sistently the worst, and the situation is not improving. Many major news-
papers and local television stations no longer even have health reporters on
their staffs, relying on general beat reporters to cover health.
The Next Phase: Open-Access, Real-Time
Information for Personalized Health
The poet Alexander Pope wrote, “The proper study of mankind is
man.” In health, one might say, “The proper study of me is me.” While
99.9 percent of all DNA is shared, the remaining 0.1 percent make all
the difference. With some diseases, “the proper study of my disease is
my disease.” This statement is particularly important when one is con-
sidering the molecular genomics of cancer because one person’s cancer
may actually be unique. This fact constitutes the basis for personalized
molecular oncology and pharmacogenomics. Increased recognition of the
uniqueness of individuals and individual diseases has led to a conflict be-
tween two perspectives on information needs and approaches to evidence
development.
On the one hand is Archie Cochrane’s basic tenet: the gold standard
for evidence development is a large randomized controlled trial (RCT)
that has sufficient statistical power to be meaningful. If there are conflicts
among clinical trial results, those conflicts are settled through meta-analysis
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PATIENTS, DECISIONS, AND HEALTH INFORMATION MANAGEMENT
(Juni et al., 1999). RCTs work well when the populations to be studied are
molecularly and genomically homogeneous, allowing standardized inter-
ventions to be tested.
On the other hand, an important movement to a more personalized
approach to medicine is taking place. This approach seeks to address the
needs of patients who fall outside the traditional groups that participate in
RCTs—the outliers and those whose diseases are molecularly and genomi-
cally heterogeneous (West et al., 2006).
For many decades, case studies have been out of vogue in medical
journals, but they may now be returning to favor. Some time ago, JAMA
published the hierarchy of evidence based on quality: RCTs are at the top,
while Level II-3 includes “dramatic results in uncontrolled experiments,”
such as the results of the introduction of penicillin therapy. During the
JAMA centennial, 68 of the best articles over 100 years of the journal
were selected and published as “landmark articles.” Notably, 5 were case
reports: in 1933, Graham’s first removal of an entire lung for bronchial
carcinoma; in 1939, Gross’s report of the successful ligation of a patient
with ductus arteriosus; also in 1939, Levine’s discovery of the Rh factor; in
1956, Merrill and Murray’s homotransplantation of a human kidney be-
tween two homozygous twins; and in 1956, DeBakey’s first aorto-coronary
bypass with a saphenous vein graft. These were all crucial events in medi-
cine, and all were case reports.
Cancer as a Case Study
Each year, 3.5 million Americans are diagnosed with some form of
cancer. Skin cancer is diagnosed in 2 million and other forms of the disease,
including melanoma, in 1.5 million. During 1969–1971, President Nixon
declared a war on cancer, initiating a massive outlay of research funding
and effort that continues today. The result has been tremendous advances
in cancer science and some therapeutic progress, primarily against child-
hood cancers, leukemia, lymphoma, and germ cell tumors. Extensive anti-
tobacco efforts have prevented many cancers. And the movement toward
palliative and hospice care continues to grow. However, between 500,000
and 600,000 Americans still die of cancer each year, and progress on sig-
nificantly reducing that number has been distressingly slow.
The slow progress of the translation of research into positive outcomes
in the treatment of cancer is disappointing. The multiyear delays from ob-
servation to successful implementation are in part a product of a system
of excessive bureaucracy; old-fashioned communication methods; and an
academic and publishing establishment that sometimes appears to care
more about preserving its ancient institutions, procedures, and self-interest
than about defeating cancer.
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144 PATIENTS CHARTING THE COURSE
Two concurrent revolutions in medicine and technology are currently
under way:
• The genomics and molecular medicine revolution—Advances in
understanding of cancer biology are leading to the rapid develop-
ment of molecular diagnostics and targeted therapies that can work
together with traditional pathology to lower costs and improve
patient care and outcomes.
— Next-generation sequencing, proteomics, and other such tech-
nologies are rapidly becoming available at dramatically lower
costs.
— Personalized, molecular medicine (oncology) is now being
added to traditional large-scale clinical trials as an approach to
creating evidence that can inform clinical decision making.
— Patient-centric research focusing in depth on individuals or
small groups is delivering results that can apply to patients
with similar disease profiles whose cancer has not responded to
“standard-of-care” treatments. This research has proven that so
many cancers are so unique that large trials are problematic in
addressing the disease.
• The Internet revolution—The Internet has democratized access to
information for patients, physicians, and researchers so they can
rapidly learn more about diseases and treatment options. The result
is demand for new services, tools, and approaches for cancer care,
including
— the organization, indexing, and personalization of credible infor-
mation to make it actionable and computable for individual cases;
— the development of decision tools and resources specific to can-
cer care;
— open science that allows physicians and researchers to collabo-
rate in real time to defeat cancer, one patient at a time;
— new approaches to funding research, including patient-funded
research and individualized fund raising, now possible at a
rapidly decreasing cost; and
— active participation of patients in their own treatment decisions,
as well as in rapid-learning communities that share what they
learn and experience with each other—what works, side effects
and quality of life—a development that raises the possibility of
every patient taking charge of his/her destiny and leaving no
stone unturned in the quest for a cure.
CollabRx is a company that seeks to harness both of the above revolu-
tions to improve individual patient care. Its initial approach was to develop
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PATIENTS, DECISIONS, AND HEALTH INFORMATION MANAGEMENT
an Internet platform called Cancer Commons for real-time translational
cancer research and personalized oncology. Key goals are:
• to bring together patients, primary care physicians, oncologists,
and researchers in academia and industry interested in applying the
latest developments in personalized, molecular oncology;
• to provide them with the latest information, tools, and resources
they need to enable each patient to achieve the best possible out-
come and to defeat cancer, one patient at a time;
• to capture and aggregate the results over all studied patients to
improve cancer treatment generally;
• to share what is learned from each patient with the clinical commu-
nity in real time so the next patient can benefit through a reduction
in the time from observation, to trial, to presentation, to publica-
tion, to treatment guidelines; and
• as the overarching goal, to run this translational loop in real time
so that what is learned from one patient can be applied to the
next, rather than waiting many years for the traditional process to
play out.
Cancer Commons is likely the only rapid-learning community that
links researchers, clinicians, and patients to defeat cancer, one patient at a
time. It is intended to disrupt traditional thinking by promoting real-time,
open-source science that includes patient input, especially from those highly
motivated individuals known as “super patients” or “disease warriors.”
The medical writing and publishing industry will also be disrupted, as it
will rely on house vetting, rapid sharing, and postpublication peer review
that promote the open exchange of creative information. The bias that in-
evitably results from a principal reliance on prepublication peer review will
decrease, including the potential bias against the publication of unpopular
or surprising results.
HEALTH INFORMATION TECHNOLOGY–BASED
APPROACHES TO HEALTH MANAGEMENT
Paul C. Tang, M.D., M.S.
Palo Alto Medical Foundation
Effective use of health information technology (HIT) can drive signifi-
cant improvements in physician and health system performance. Without
engaging patients and supporting their active participation in managing
their own health, however, the nation will still fall short of its health
goals—for both individuals and the population. A learning health system
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146 PATIENTS CHARTING THE COURSE
for patients places priority on meaningful applications of HIT to help
patients gain access to their health data, relevant knowledge, and tools to
guide self-care and health management. Shared information can help to
create an effective partnership between the professional health team and
patients in order to improve patients’ health.
The Palo Alto Medical Foundation (PAMF) has developed several
promising approaches to using HIT to support a learning health system
for patients. These approaches involve providing information and tools at
the point of care and in the home to support better decision making and to
engage patients in active learning and health management.
Status Quo for Health System Improvement
Overall, national healthcare quality scores are improving by only
2 percent per year (AHRQ, 2009). In just about any other industry, this
rate of improvement would be unacceptable. What can we do differently to
accelerate the rate of improvement in health and health care? A key enabler
is to provide data, knowledge, and tools to all decision makers—clinicians,
patients, and their families.
Driving Physician Change Through Data
Providing health professionals with accurate, relevant information in
real time is one of the most powerful means by which EHRs can drive care
improvement. HIT-enabled clinical decision support and quality-reporting
feedback have demonstrated significant and immediate impact on physician
performance. Using clinical decision support tools embedded in its EHR,
PAMF has been able to better support informed decision making by physi-
cians, resulting in orders that reflect up-to-date clinical information and
medical knowledge. EHR systems can also provide near real-time feedback
on physician performance. PAMF provides its physicians with unblinded
quarterly performance data displayed alongside data from their home medi-
cal department. Of importance, the quality metrics are derived from clinical
data from the EHR, which the physicians find credible. In contrast, most
public reporting measures are derived from billing data, which contain
significant errors, making them less reliable to use. Credible data are key
to changing behavior.
The effect of providing point-of-care decision support and frequent
performance reporting has been striking. The national benchmark for con-
trol of diabetes—a hemoglobin A1c (HbA1c) level below 7—is around
50 percent. In contrast, PAMF has seen quarterly improvements in HbA1c
control and is performing 40 percent better than the national average. Hav-
ing a 70 percent score is still not optimal, however. For the organization
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PATIENTS, DECISIONS, AND HEALTH INFORMATION MANAGEMENT
to close that 30 percent gap, patients must be included in the process of
managing their health.
HIT to Transform the Patient Experience
For patients, diabetes is a ravaging disease that is lived with by making
hundreds of decisions, such as what to eat and whether to exercise, re-
membering to take their medications, checking their blood glucose, and so
on. If patients are going to make the decisions that can keep their diabetes
under control, they also must have good and timely information. Not
surprisingly, as with physician performance improvement, patients benefit
from the provision of real-time information more than from a physician
critique 3 months after making a decision. Moreover, information must
be understandable to patients and relevant to their individual health goals
and concerns.
Personalized Health Goals
Physicians need to understand their patients’ preferences and individual
health goals. Some patients want to live until 90, others may want to see
their grandchildren graduate, and some want to avoid having a stroke. The
way to learn about patient goals is to ask. A Stanford University project
sponsored by The Robert Wood Johnson Foundation, called Living Profile,2
illustrates the power of this approach.
In the project, children with serious chronic diseases were asked what
information they would like to put in their personal health record (PHR)
for their doctor to read. One teenage girl described her life activities, not
referring explicitly to her chronic condition: “I don’t think that my condi-
tion makes me who I am.” When the same question was asked of adults
with diabetes, their responses were also insightful, revealing opportunities
to teach and to better understand patient needs and concerns. For example,
an individual with type 2 diabetes asked, “If I do all the right things, can
I reverse this diagnosis?” If the provider community does not clearly and
consistently answer this question for people with diabetes—many of whom
have lived with their condition for decades—it is missing an important op-
portunity to improve health.
Understanding patient goals also enables physicians to clarify or ex-
press guidance on aspects of the patient’s situation more effectively. Some-
times patients have very specific goals. For example, one woman had a
daughter in kidney failure, and her goal was to be healthy enough to give
her daughter a kidney. Such strong, motivating health goals offer a physi-
2 For more information see http://livingprofiles.net/ (accessed October 14, 2010).
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148 PATIENTS CHARTING THE COURSE
cian the chance to develop, in collaboration with the patient, care manage-
ment plans to reflect progress toward and attainment of patients’ personal
health goals.
Personal goals do not change medical advice, but they change the ap-
proach and agenda for providing the advice. Some patients may say they
need help in quitting smoking. Others may say that exercise is boring. Still
others may want to understand how to control their diet. In every case,
patients’ goals are key to helping them make decisions that can improve
their health. Not many physicians engage in these sorts of discussions
with their patients; thus, a focus on identifying personalized goals holds
great potential for providing insight on the approaches and information
that that can best help the patient.
Use of HIT to Help Patients Monitor Health Data
Once patients’ goals are understood, HIT offers a means to help them
achieve those goals. Take, for example, patients who want to control their
diet. The physician can provide a list of appropriate foods, as well as a
glucometer to help monitor blood glucose. PAMF has taken this approach
a step further and distributed wireless glucometers to patients with diabetes.
This changes the device from a tool that simply measures glucose into an
instrument that changes behavior. Rather than requiring patients to record
their glucose readings in a diary, followed by a trip to the physician’s office
for consultation, the electronic glucometer transmits data to the patient’s
cell phone, which forwards the data to PAMF’s EHR system. If the graph of
home glucose readings shows a little blip, patients can annotate the reading
online with a short note so they can explain to the physician the circum-
stance causing this change.
The personal health goal therefore provides an important context for
discussions with the physician about glucose data. The patient may be
concerned that a relative lost a leg to diabetes or that a coworker had a
heart attack or a stroke from diabetes. Using an EHR-produced diabetes
dashboard, the physician can illustrate the patient’s risk of experiencing
the same thing. After reviewing the glucose data, the physician can review
other, related tests, such as the lipid profile, the HbA1c, and blood pres-
sure readings. Teaching the patient how certain values increase the risk for
bad outcomes can help the patient select new health goals. The physician
can show how certain test results relate to the goal. These data provide
a learning experience for patients—connecting, in this case, the need for
active monitoring of blood glucose with the effect of diet, exercise, and
medications.
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PATIENTS, DECISIONS, AND HEALTH INFORMATION MANAGEMENT
From Learning to Changing Behavior
The diabetes dashboard helps patients see how things change in re-
sponse to their behavior and adherence to a health management plan (Fig-
ure 6-1). Its features illustrate the impact of certain behaviors and reinforce
what is needed to achieve personal health goals.
PAMF is conducting a randomized controlled trial to evaluate the
impact of its online disease management system, including the tools dis-
cussed above. An early focus group discussion conducted with beta trial
participants reinforced the potential of the approach. Patients initially
participated in measuring and tracking their glucose because PAMF clini-
cians were looking at the results—in a sense, because they were told to.
However, focus group discussions revealed that as time went on, patients
became more engaged and started using the system for themselves because
the information illustrated how what they ate affected their readings, or
it enabled them to actively learn and watch how their behavior and their
decisions impacted their health outcomes. Comments from the focus group
members also underscored the role of the dashboard in helping them make
better decisions. For example, denial became more difficult because they
now knew how a decision, say, on whether to eat a piece of pastry would
affect their readings and their risk. Such a decision is just one of the hun-
dreds that patients must make to improve their health.
The use of HIT can drive improvements in physician and health system
performance, but it can also transform patients, patients’ lives, and their
health decisions. The use of PHRs provides patients with access to their health
information; tools with which to visualize and learn from these data; and,
more important, a means to engage them in their health care by making them
part of the health team. Enabling learning among the entire health commu-
nity, which includes patients, must be the goal of a learning health system.
HEALTH AND DISEASE MANAGEMENT OUTSIDE THE
CLINIC DOORS: THERE’S AN APP FOR THAT!
Doriane C. Miller, M.D.
University of Chicago Medical Center (former)
Institute for Healthcare Improvement
The availability of HIT applications, changing population demographics,
and changes in capacity to deliver primary care are impacting the growth
of health and disease management activities that occur outside the clinical
setting. This paper reviews the context of primary care delivery for pro-
viders and patients, the challenges of providing care outside of the office
visit, promising HIT approaches to help patients access information and
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150
FIGURE 6-1 Use of the diabetes dashboard to provide a learning system for patients. The dashboard provides a means for patients
to review their health action plans, personal health risks, modifiers of their risks, and actions to reduce complications.
SOURCE: Palo Alto Medical Foundation. Figure 6-1.eps
2 bitmaps, landscape
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PATIENTS, DECISIONS, AND HEALTH INFORMATION MANAGEMENT
care, and policy implications of these approaches and barriers to their
dissemination.
The public image of the physician of the 1940s was one of being
available 24 hours a day, 7 days a week; tolerating conditions of adverse
weather; and neglecting personal commitments to attend to the urgent
healthcare needs of patients. Indeed, a popular cigarette manufacturer
promoted this image as one reason why physicians should smoke cigarettes
(Gardner and Brandt, 2006).
Although scientific evidence has subsequently refuted the need for
cigarettes as a “therapeutic” stimulant for physicians, the image of the
availability of physicians for health information on demand has persisted.
Physicians have continued to seek ways in which health care can be ex-
tended to patients outside of the clinic doors, particularly to improve health
outcomes for the chronically ill.
As medical costs skyrocketed in the 1990s, payer groups concerned
about the effects of healthcare costs on both the corporate bottom line
and the health of the workforce made significant investments in disease
management organizations that could work in conjunction with healthcare
providers to improve care outside the clinical setting and encourage better
outcomes (DMAA, 2006). However, the environment of healthcare delivery
continues to evolve as society changes and medical advances are achieved.
What are some of the environmental factors driving this change, and how
is HIT helping to achieve the goal of extending care beyond the clinical
setting?
Societal Changes
Personalized Medicine
In 2003, the National Human Genome Research Institute completed
the mapping of the entire human genome, heralding the age of personalized
medicine. Seeing the enormous potential for generating therapies specifi-
cally targeted to individuals based on their genetic profiles, environmental
risk factors, and lifestyles, bench scientists, clinicians, pharmaceutical com-
panies, information technology experts, and patients began seeking ways
to link this burgeoning information to treatment of the individual. One of
the recommendations generated by the Personalized Medicine Coalition
through its public education arm, The Age of Personalized Medicine,3 was
to have a secure, interoperable EHR for every American, bringing together
personal, clinical, and molecular information that can facilitate improve-
3See http://www.ageofpersonalizedmedicine.org/center/policy/hit.asp (accessed October 14,
2010).
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152 PATIENTS CHARTING THE COURSE
ments in therapeutic care in a patient-centered fashion. The ability to cap-
ture electronically information submitted by both patients and clinicians,
as well as genomic information, will lead to better therapeutics and better
outcomes for people with chronic health conditions.
Baby Boomers and Health Care: Supply and Demand
In 2011, 78 million people, the first wave of the Baby Boom genera-
tion, will reach age 65. By 2030, it is estimated that one of five people in
the United States will be over age 65. The average American over age 75
has three chronic health conditions and takes four medications. Although
older Americans are living longer and healthier lives, their healthcare needs
are often complex. An Institute of Medicine report titled Retooling for an
Aging America: Rebuilding the Health Care Workforce contains the recom-
mendations that the number of physicians trained in care of the elderly be
substantially increased, that the nonphysician long-term care workforce
be expanded, and that informal caregivers be better prepared to provide
care to aging loved ones (IOM, 2008). Despite a 1-year trend toward in-
creased numbers of students selecting primary care careers, however, the
Association of American Medical Colleges predicts there will be a shortage
of approximately 50,000 primary care physicians by 2025 (AAMC, 2010).
Most aging adults are cared for by general internists or family physicians—
the adult primary care physicians—but estimates suggest that there will not
be enough of these physicians. Can HIT help to fill this gap?
Incentives Through Accreditation: The Patient-Centered Medical Home
and HIT
In 2007, the American College of Physicians, the American Osteopathic
Association, the American Academy of Family Physicians, and the Ameri-
can Academy of Pediatrics joined forces to delineate the principles of the
patient-centered medical home (PCMH). One of the hallmark values of
this document is that health care should be facilitated by the presence
of registries, health information exchanges, and EHRs to ensure that pa-
tients receive care when and where they need and want it in a culturally and
linguistically appropriate manner. HIT should be used to support optimal
patient care, performance measurement, patient education, and enhanced
communication (NCQA, 2008). The National Committee for Quality As-
surance operates the voluntary accreditation PCMH demonstration through
its Physician Practice Connections® program. Although not a mandatory
component, advanced electronic communication—including the availability
of an interactive website, electronic patient identification, and electronic
care management support—was included as a 2009 update.
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PATIENTS, DECISIONS, AND HEALTH INFORMATION MANAGEMENT
Approaches to Health and Disease Management Outside the Clinic Doors
With the changing demands of consumers, the aging of the popula-
tion, and incentives for quality improvement, how can HIT facilitate better
healthcare outcomes at lower cost? Following are three examples of ap-
proaches that might be adopted more widely with the growth of HIT.
Patient Electronic Health Record Portals
As part of the demonstration initiative Pursuing Perfection, a project
of the Institute for Healthcare Improvement, participants from Whatcom
County, Washington, decided to fully embrace the concept of patient-
centered care by facilitating communication between chronically ill patients
and their healthcare delivery system. With patients as part of the planning
team, they developed the website www.patientpowered.org, which includes
information on initiatives to improve patient-centeredness, as well as use-
ful information and tools for self-management of chronic conditions. Part
of the Patient Powered website is a shared care plan (SCP)—a document,
either web-based or on paper, that allows patients to gather all their health-
related information in one place. The document includes the patient’s
personal profile, healthcare team members, chronic and long-term diagno-
ses, self-management and lifestyle goals and action steps, treatment goals,
names of prescriptions, medications and allergies, and advance directives.
An SCP is designed to be much more user-friendly than a dense medical
record, which typically is organized chronologically and fragments infor-
mation by individual providers and locations. Patients can store the SCP
information on paper or on a secure website linked to patientpowered.org
and can upload information themselves or have other family members add
vital information about their care. An evaluation of the implementation
of the SCP through patientpowered.org in conjunction with a clinical care
specialist (nurse or social worker) demonstrated increased patient satisfac-
tion with clinical care and a cost savings of approximately $3,000 per year
for enrolled patients (Safford).
The Missing Link: Web-Based Support Groups and the Patient’s
Medical Home
In the national demonstration effort New Health Partnerships: Im-
proving Care by Engaging Patients, 35 teams around the United States
developed demonstration projects designed to improve self-management
support within and beyond the clinical setting. One of the demonstration
sites, Fargo Health Center, a federally qualified health center in Fargo,
North Dakota, decided to concentrate on diabetes as a target condition.
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154 PATIENTS CHARTING THE COURSE
Patients at Fargo Family Health Center decided they wanted to create a
blog and listserv for patients living with diabetes. Instead of joining a public
blog/support group for patients with diabetes, the patient advisors in the
demonstration felt it was important that their providers know about their
struggles and celebrations in living with diabetes. They also wanted to learn
from other patients being treated at the health center. Patients registered
for the site, and individual peer-to-peer phone calls were available for ad-
ditional support. In the spirit of the phrase “all politics is local,” patients
decided to create a geographic and condition-specific community of support
for themselves that could be accessed by their clinical providers. Technical
issues such as security and sharing of clinical information were challenges
for this team. However, the opportunity to create a local community of
patients who could offer each other support, provide information to their
clinical partners, and impact the care provided at the local level helped the
team decide to take on these issues and find effective ways of managing
concerns about privacy and security for their participants (Miller, 2006).
eVisits: Saving Time and Money and Improving Satisfaction
Electronic provider visits hold the potential for enhancing patient–
provider communication and enhancing the ability of primary care pro-
viders to offer care for nonurgent medical issues. The webVisit Study:
Impact of Online Doctor-Patient Communication on Satisfaction and
Cost of Care, conducted by researchers at Stanford and the University of
California at Berkeley, evaluated whether using the eVisit platform offered
by the company Relay Health was associated with satisfaction. Participat-
ing organizations included several health plans and large medical groups in
California and Connecticut and 10 large self-insured employers. The inter-
vention group included 282 physicians and 3,688 patients. Compared with
controls, patients were 50 percent less likely to miss work; 45 percent were
less likely to need a face-to-face visit with a physician, and 36 percent were
less likely to telephone the physician’s office. Physicians reported that the
system was easy to use (72 percent), satisfying (53 percent), and preferable
to an office visit for nonurgent care (56 percent). Analysis of health claim
costs for the intervention group showed a statistically significant lower cost
for office-based claims (p <0.01) and total claims (p <0.05) (Zimmerman
et al.).
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PATIENTS, DECISIONS, AND HEALTH INFORMATION MANAGEMENT
Barriers to Adoption
Social Acceptability
Are patients ready, willing, and able to “visit” their physicians via
the web? In an August 2008 study from the Center for Studying Health
Systems Change, investigators demonstrated a dramatic change in the way
consumers are seeking health information, with a doubling of the number
of survey respondents stating that they seek health information from the
Internet (Figure 6-2) (Tu and Cohen, 2008). However, in a July 2008 study
posing the question “Does the Internet replace health professionals?, 86
percent of all adults said they ask a health professional versus 57 percent
who said they use the Internet (Lee, 2008). Blending the convenience of
the Internet with a trusted source who understands one’s personal medical
history, the use of eVisits and personal health portals may be an acceptable
way to communicate with physicians.
The Digital Divide: Race, Ethnicity, and Poverty
Given social acceptability, will patients have access to the Internet so they
can communicate with their physicians? The Pew Internet and American Life
Project tracks trends and issues related to age, race, ethnicity, and health. In
60% 2001 2007 55.8
50%
38.2
40%
32.7 32.0
31.0
30%
23.0
19.7
20%
16.0 15.3
11.3
10%
5.3
2.2
0%
Other
Internet
Books, Any
TV or
Friends or
Magazines, Relatives Source
Radio
Newspapers
FIGURE 6-2 Consumers are increasingly seeking health information from the
Internet.
Figure 6-2.eps
SOURCE: Image appears courtesy of the Center for Studying Health System Change.
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156 PATIENTS CHARTING THE COURSE
a 2009 survey, 79 percent of whites, 67 percent of blacks, and 80 percent
of Latinos said they used the Internet. Use of wireless handheld devices was
actually greater for blacks and Latinos than for whites (Horrigan, 2009). In
addition, Latinos with annual incomes below $30,000 had increased their use
of the Internet by 17 points between 2006 and 2008 (Fox, 2009). Internet
use is increasing across the board, and the differential use of web-enabled
handheld devices may signal just-in-time health management opportunities
for some patient populations.
The Penetration of Electronic Medical Records: Supply and Demand
In a 2007–2008 national survey of 2,758 physicians, only 17 percent
of practices reported having EHR systems, with 26 percent indicating that
they planned to buy such a system within the next 2 years (DesRoches et
al., 2008). Physicians most likely to have EHR systems belonged to large
practice groups, hospitals, or medical centers. Cost has been described as a
barrier to purchasing such systems. The impact of the 2010 federal health-
care reform legislation supporting technical assistance for primary care
providers in establishing EHR systems should be studied.
Reimbursement for Electronic Communication: Fact or Fiction
Many physicians continue to be concerned that they cannot bill third-
party payers for Internet communications with patients. Although specific
reimbursement policies vary from insurer to insurer, in 2008 the American
Medical Association’s Current and Procedural Terminology was revised to
allow for billing for online patient services. Online services have a desig-
nated code that can be used once per episode of care over a 7-day period
and can include any follow-up issues, including prescriptions, laboratory
services, and ordering of imaging studies (Porter, 2008).
Looking to the Future
Primary care delivery capacity, evolving HIT platforms, and demo-
graphic and market forces will shape the future use of the Internet as a
vehicle for extending health care beyond the clinical practice setting. Recent
studies show that the delivery and support of care through web-based plat-
forms can increase patient and provider satisfaction while decreasing cost.
As these web-based platforms continue to grow, developers should keep
in mind the importance of the input of patients and their caregivers in the
creation of these products.
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