Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter.
Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.
OCR for page 235
10
Common Themes and
Opportunities for Action
INTRODUCTION
As noted in Chapter 1, the discussions summarized here had broad ob-
jectives: to review the state of play with respect to the foundational elements
of a learning health system; to explore the hallmarks of patient engagement
for care that must keep science, patients, and value in focus; and to discuss
strategies important for improving the awareness and patient-focused ac-
tion necessary for the transition to a learning health system.
With a scope this broad, the discussions spanned many issues, but
certain elements served as frequent reference points throughout the discus-
sions. This chapter provides a review of those common themes, and also
summarizes a session entitled Strategies and Priorities in which panelists
were asked to reflect on what they heard about compelling policy issues
moving forward.
Emerging from workshop discussion is the notion that a learning health
system should focus on patients and their family, caregivers, or agents;
should default to openness; should listen to the patient’s voice; and should
promote respect, transparency, and patient feedback.
COMMON THEMES
Common themes that emerged during the course of the 2 days of dis-
cussion (see Box 10-1) are summarized below.
Listening. Each patient–clinician interaction starts with uninterrupted atten-
235
OCR for page 236
236 PATIENTS CHARTING THE COURSE
BOX 10-1
Patient-Anchored Care: Common Themes
• istening. Each patient-clinician interaction starts with uninterrupted attention
L
to the patient’s voice on issues, perspectives, goals, and preferences.
• articipatory. Health outcomes improve when patients are engaged in their
P
own care.
• eliable. All patients should expect proven best practice as the starting point
R
in their care.
• ersonalized. With proven best practice as the starting point, science-based
P
tailoring is informed by personal biological traits, circumstances, and preferences.
• eamless. Care delivered by multiple providers in multiple settings should be
S
fully integrated and seamless.
• fficient. Patients, their families, and clinicians should expect care to be ap-
E
propriate to the need, available resources, and time required.
• ccountable. All relevant aspects of the clinical experience, including patient
A
perspectives, should be captured and routinely assessed against expectations.
• ransparent. Information on the outcomes of care—both effectiveness and
T
efficiency—should be readily accessible and understandable to patients
and their families.
• rustworthy. Patients should expect a strong and secure foundation of trust on
T
all dimensions—safety, quality, security, efficiency, accountability, and equity.
• earning. In a learning health system, the patient is an active contributor to
L
and supporter of the learning process.
tion to the patient’s voice on issues, perspectives, goals, and preferences.
These patient views should then be used to guide clinical decisions, which
often involve choices among multiple treatments that have both benefits
and risks. Workshop participants reported that care often improved when
staff and providers listened carefully to the concerns of patients and their
families. Yet, it has been noted that physicians tend to interrupt patients
within about 15 seconds of beginning to speak at the outset of the visit. On
the other hand, an uninterrupted patient tends to conclude their remarks in
under a minute (Beckman and Frankel, 1984). Listening fully to the patient,
then, does not cause any significant delays in the physician’s schedule, and
adds substantially to creating an environment where patients feel comfort-
able sharing their health information. Achieving this goal will require a
new focus on patient communication starting early in provider education
to ensure that providers have the tools they need to share complex health
information with patients and help them with these decisions.
Participatory. Health outcomes improve when patients are engaged in their
own care. In addition to improving health outcomes and patient adherence,
OCR for page 237
237
COMMON THEMES AND OPPORTUNITIES FOR ACTION
participants noted that engagement can increase employee satisfaction and
financial performance. People are eager to play a strong role in their own
health care when given the right tools, as evidenced by the rapid uptake of
Web 2.0 health information applications. Yet as one speaker mentioned,
surveys indicate that only half of patients receive clear information on
the benefits and trade-offs of the treatments under consideration for their
condition. Patients’ involvement may be increased by providing them with
additional information tools for learning about their health, helping them
see the impact of their efforts, and acquainting them with new technologies
with which to monitor their health and assist with lifestyle changes. Public
participation is not limited to the clinic; the workshop highlighted new
initiatives to provide access to health data and allow individuals to create
new applications to improve their health.
Reliable. Each patient should expect proven best practice as the starting
point in their care. The current variability in medical practice impacts
patient care and results in uneven quality and safety for patients. Par-
ticipants described tools that minimize this variation, such as dashboard
displays that highlight the interventions that are due, done, or overdue and
improve the consistency of the delivery of interventions to patients; other
technologies that show promise include clinical decision support systems
that present best practices to clinicians. Several participants also noted that,
while technologies provide new opportunities, incentives, such as bundled
payments and pay for performance, are needed to promote reliability and
effectiveness in healthcare organizations and ensure accountability.
Personalized. With proven best practices as the starting point, science-based
tailoring is shaped by personal biological traits, genetics, circumstances,
and preferences. Since the sequencing of the human genome was accom-
plished, medical science has sought to personalize treatments to specific
biological traits and genetics, in addition to personalizing care based on
individual patient circumstances and preferences. This effort challenges the
traditional approach of giving the highest priority to evidence gathered by
means of large randomized controlled clinical trials, in which treatments
are measured in a large population with a diverse genetic profile. Using
multiple types of complementary evidence could better guide medical deci-
sions and account for these personal factors. This new approach focuses
on the applicability of results to the clinic, rather than automatically giving
priority to the results of randomized controlled trials.
Seamless. Care delivered by multiple providers in multiple settings should
be nonetheless expected to be fully integrated and seamless. As patients
move among providers and settings, they often encounter communication
OCR for page 238
238 PATIENTS CHARTING THE COURSE
problems, which may result in treatment errors and duplicative services.
Participants described how team-based care offers the potential to rectify
this disconnected care and limit human error. Effective teams are aided by
an appropriate information technology infrastructure, which facilitates
efficient and effective communication of health information. Encouraging
the use of such teams will likely require the use of financial incentives, in-
cluding bundled payments and payments that focus on outcomes; applying
disincentives for poor outcomes, such as for preventable hospital readmis-
sions; and creating incentives for delivery system reforms, including medical
homes and accountable care organizations.
Efficient. Patients, their families, and clinicians should expect care to be
appropriate to need, resources, and time required. Participants underscored
the fact that currently, much of the care that is delivered is neither necessary
nor efficient, with patients facing increasing out-of-pocket costs and lost
time in the care process. This finding is not surprising given that the cur-
rent incentive structure, focused on volume over value, encourages overuse
and waste. As multiple participants noted, the United States spent roughly
17 percent of its gross domestic product on health care last year, yet this
investment does not yield the health outcomes commensurate with the
costs. To gain greater value, many participants stressed that the costs and
outcomes of care should be more transparent to patients, and new payment
models—ranging from bundling payments for an entire episode of care, to
pay-for-performance systems, to global payment—need to be implemented.
Accountable. All relevant aspects of the clinical experience, including
patient perspectives, should be captured and routinely assessed against
expectations. This information is vital not only to achieving effective pa-
tient management, but also to judging whether experiments with new de-
livery system models, payment incentives, or standards of care are having
their intended effect on improving patient health and promoting efficiency.
Measuring performance and disseminating innovations that work (and
eliminating those that do not) constitute a systematic way of improving
healthcare delivery. One presentation highlighted how this systematic ap-
proach to improvement allowed the speaker’s organization to enhance care
by conducting comprehensive reviews of interventions for different condi-
tions, adopting the best practices identified by that review, and measuring
the performance of the revised standard of care.
Transparent. Information on the outcomes of care—both effectiveness and
efficiency—should be readily accessible and understandable to patients
and their families. Several speakers mentioned the frustration felt by
patients regarding the lack of understandable information on the costs,
OCR for page 239
239
COMMON THEMES AND OPPORTUNITIES FOR ACTION
quality, and outcomes of care, especially in light of reports about medical
errors and the increasing personal burden of costs and inefficiencies of care.
It was noted that, when offered a choice, patients do not routinely choose
more costly or more intensive interventions. However, patients rarely have
choice or information about alternatives. It is clear that information needed
to improve value—better outcomes at lower cost—requires transparent
information on the costs and outcomes of care.
Trustworthy. Patients should expect a strong and secure trust fabric on all
dimensions—safety, quality, security, efficiency, accountability, and equity.
In few areas of human endeavor is trust on each of these dimensions more
important. Yet one presenter noted that, even though 50,000 to 90,000
deaths per year are caused by medical errors, health care lacks the basic
trust elements of transparency and accountability needed to drive improve-
ments in quality and safety. In a learning system that draws lessons from
each care experience, public trust must be bolstered in all aspects of the
healthcare enterprise: equitable access to reliable clinician knowledge and
skills, safeguards on clinical processes, the privacy and security of medical
records, and the validity and safety of clinical trials.
Learning. In a learning health system, the patient is an active contributor
to, and supporter of, the learning process. Each patient experience offers
the potential to deepen the knowledge base that drives care quality and
outcomes—at the individual, practice, and societal levels. A focus of the
workshop was the stake of the patient in fostering a digital health utility
that provides needed information to patients and their clinicians, ensures
synchronization among providers, and generates knowledge for progress—
for example, for comparative effectiveness insights, public health activities,
or postmarket monitoring of approved technologies and drugs. Refer-
ence was made, for example, to the need for a common core data set for
electronic health record–based data that would allow reliable, platform-
independent research across large patient populations. These are issues in
which patients have a strong stake, and they must have confidence in the
system’s functionality for the generation of timely and reliable new insights.
STRATEGIES FOR MOVING FORWARD
Throughout this workshop, participants reflected on the state of play of
health care today; identified the opportunities and impediments for trans-
forming health care into a continuously evolving, learning health system;
considered the needs of different stakeholders—patients, family members,
the public, physicians, healthcare teams, or leaders; and addressed the im-
pediments for achieving this vision.
OCR for page 240
240 PATIENTS CHARTING THE COURSE
The Need to Engage Patients and the Public
Developing active learning skills, rejecting patronizing attitudes to
patients and inviting patients to the table on all matters pertinent to health
and health care were often raised in discussions as crucial in moving
ahead. Early in the workshop, participants made clear their priority for re-
engineering the healthcare system around the needs of patients. Frequently
suggested strategies for patient engagement included: involving patients as
partners in the design of research, inviting patients to technology assess-
ment and coverage-decision making meetings, stimulating dialogue between
patients and industry, asking patients about their opinions of the health
system, fostering shared decision making, and sharing information in the
most transparent way.
Focus on Learning
The Roundtable vision of a learning health system was frequently ref-
erenced by participants. Speakers envisioned a system in which advancing
science and clinical research would be natural, seamless, and a real-time
byproduct of each individual’s care experience; highlighted the need for a
clinical data trust that fully, accurately, and seamlessly captures health expe-
rience and improves society’s knowledge resource; recognized the dynamic
nature of clinical evidence; noted that standards should be tailored to the
data sources and circumstances of the individual to whom they are applied;
and articulated the need to develop a supporting research infrastructure.
Often noted was the imperative to make sure that learning encompasses
all groups. Particularly striking was the repeated emphasis on learning for
patients, learning for clinicians and clinician teams, and learning for organi-
zations. Learning must be customized for each group. Patient learning must
be tailored depending on health problems, literacy levels, and interest in self-
management in order to affect patient behavior, maximize clinical adherence,
and improve health outcomes. Similarly, presenters highlighted that clinicians
learn differently depending on their career stage. Medical students might be
blank slates for learning teamwork, electronic health systems, and collabo-
ration, while experienced clinicians may need to have materials adjusted to
their practice patterns. Finally, organizations vary in their ability to adjust,
with some organizations having substantial resources to devote to innovation
while others try to cope with their current practice load.
Public Communications Vital to Success
One of the key challenges identified in the workshop was the need
for better communication strategies. Information about science and medi-
OCR for page 241
241
COMMON THEMES AND OPPORTUNITIES FOR ACTION
cal care often is presented in an oversimplified format where risks and
uncertainty are not discussed. This is compounded by media strategies
that dramatize health information or are shaped by groups that shape
messages based on their own self-interest. As noted by Fran Visco of the
National Breast Cancer Coalition, messages that are over-simplified or
under-interpreted can lead to public controversies instead of rational discus-
sions about evidence, as occurred during the update of the U.S. Preventive
Services Task Force recommendations on breast cancer screening.
Health communications could be improved by learning from other
sectors with expertise in public communications, ranging from the media
to advertising to new media firms. These organizations have conducted
substantial research into the efficacy of different communications strategies
and whether they influence public behavior. Building on this expertise, more
research is needed on how science and medical evidence are absorbed by
the public and the impact of different messaging methods.
These initiatives also should take advantage of new media technolo-
gies. One example discussed was Text4baby, a service for pregnant women.
Provided to any woman who enrolls, it provides weekly health messages
targeted to a woman’s due date and the first year of a baby’s life via text
message. The service is a partnership where cellphone companies have
agreed to pay for costs of the text messages. Early anecdotal reports suggest
positive reactions from the participants.
Although these targeted campaigns produce successes, further improve-
ments require a stronger investment in widespread health literacy. Health
literacy has a stronger impact on a patient’s health than age, income, race,
or other factors (Ad Hoc Committee on Health Literacy for the Council
on Scientific Affairs, 1999). A key opportunity for teaching health concepts
is the primary and secondary educational system, where children could be
taught concepts such as risk, evidence uncertainty, and disease prevention
along with the skills to analyze health information.
Public understanding of health issues is heavily influenced by news
media reporting. Current health reporting entails covering complex finan-
cial, public policy, and scientific issues, ranging from health insurance
structures to clinical trial results to legislative proposals. Journalists must
cover this broad range of complex issues and make them accessible and un-
derstandable while ensuring the stories remain accurate and comprehensive.
Achieving these aims requires increased education of journalists that cover
health issues to assist them in their work. However, as noted by presenters,
traditional media channels are not the only venue for delivering information
to patients, and patients and consumers now receive most of their medi-
cal and health information from the Internet. The volume of knowledge
available will increase in the future because of open access journals, public
access policies, and collaborative web forums.
OCR for page 242
242 PATIENTS CHARTING THE COURSE
LOOKING AHEAD TO NEXT STEPS
The IOM Roundtable on Value & Science-Driven Health Care provides
a trusted venue for sustained discussion and collaboration between national
experts and health system stakeholders on issues important to improving
the generation and application of evidence in healthcare decisions. It has
advanced these discussions through five Innovation Collaboratives on clinical
effectiveness research, electronic health records, best practices, evidence com-
munications, and value incentives. With the passage of the Affordable Care
Act, the Roundtable has new opportunities to engage in those five areas and
promote the creation of a learning health system. The meeting’s discussions
identified a number of promising suggestions for continuing the Roundtable’s
work to achieve a learning health system, with the following issues deserving
further attention and action by the members of the Roundtable.
Clinical Effectiveness Research
• How do various research methodologies produce results that con-
tribute to personalized treatments, real-time learning, and clinical
relevance? Should the Roundtable and its Clinical Effectiveness
Research Innovation Collaborative develop a new taxonomy of
research approaches that advance these goals?
• What steps can encourage greater patient involvement in the evi-
dence process, from fostering participation in clinical trials, to
initiating data collection for disease research, and developing ap-
plications from existing data?
Evidence Communication
• How can the Roundtable and its Evidence Communications Inno-
vation Collaborative encourage the development of best practices
in health communications, whereby complex information is deliv-
ered in simple and easy-to-understand formats? What steps can
be taken to compile information on successful concepts, such as
patient coaching, question checklists, and patient decision aids?
• What steps can be taken to encourage the education system to
teach students how to analyze health information as well as related
concepts, such as how to gauge risks and benefits, in order to pro-
mote broader health literacy?
• How can the Roundtable connect leaders from enterprises with
expertise in consumer communications, such as media outlets and
advertising, with health system leaders to transfer the lessons they
have learned?
OCR for page 243
243
COMMON THEMES AND OPPORTUNITIES FOR ACTION
• Given that the media are a key supplier of health information, what
steps can be taken to enhance the health literacy of journalists so
as to improve the information delivered to the public?
• With more Americans obtaining health information from the
Internet, how can the Roundtable encourage the development of
websites with authoritative medical information for consumers?
Best Practices
• Given the benefits of engaging patients and families in their medical
care, how might patient-centered care be encouraged throughout
the medical system?
• What steps can the Roundtable and its Best Practices Innovation
Collaborative take to encourage the use of technologies, such as
dashboard displays or procedure checklists, that reduce variability
in care management and improve the reliability of the use of best
practices?
• What impediments prevent patient preferences and goals from
being considered in all care decisions?
• Given the advantages of team-based care in promoting coordinated
care and quality improvement, how can a team approach to care
delivery be encouraged?
Electronic Health Records
• Developing a learning health system will require the use of clini-
cal data as a reliable source for clinical research. How might the
Roundtable and its Electronic Health Record Innovation Collab-
orative encourage the development of standards and approaches to
assure the quality of these data?
• Since an effective health information utility was identified as a
prerequisite for care coordination, continuous learning, and mea-
surement of outcomes, what steps could Roundtable members and
its Electronic Health Record Innovation Collaborative take to ac-
celerate the adoption and use of such a utility?
• Given the accelerated development of medical evidence, what
might the Roundtable do to explore expanded decision support at
the point of care?
Value
• With the creation of new reimbursement incentives to promote
value, how might the Roundtable and its Value Incentives Learn-
OCR for page 244
244 PATIENTS CHARTING THE COURSE
ing Collaborative develop a framework for ongoing assessment of
the efficacy of these reimbursement experiments with respect to
increasing value?
• What specific actions could be taken to reduce healthcare costs
and increase value? What incentives are needed to encourage those
actions?
• What incentives, financial or otherwise, are needed to encourage
providers to place greater emphasis on engaging patients in their
care?
As these issues are considered, it is important to note that the focus of
the workshop was ultimately for and about the patient. Addressing these
specific issues will help to move the health system toward one that provides
the right care to the right person at the right time and for the right price.
There is an opportunity to reach this ideal, but it will take commitment
from all stakeholders, leadership, and diligence to reach a health system
where patients are able to chart their own course.
REFERENCE
Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, A.M.A., 1999.
Health literacy. Journal of the American Medical Association 281(6):552-557.
