In 1993, Sandra Silvestri's 2-year-old son Joey was diagnosed with Type 1 diabetes.
Today, she reflects on the calamity of Joey's illness and the promise of medical research:
"We carried him into the emergency room, near death, and literally placed him in the
arms of the health care system. From this moment on our family has been dependent on the
health care system to keep our son alive. Research is an extension of this lifeline."
Public investment in basic research during the past century produced breathtaking
advances in our fundamental understanding of life, health, and illness. Coupled with new
tools recently developed in the public and private sectors - such as genetic engineering
and rational drug design - this new knowledge puts us on the threshold of solving many of
our most serious health problems. Joey Silvestri's diabetes may be cured by a new ability
to replace the insulin-producing pancreas cells he lost to autoimmune attack with new
ones. Spinal-injury patients may soon be able to regenerate nerves and walk again. In the
not-too-distant future, we will even be able to create genetic health profiles of
individuals to allow us to better predict risk of illness - then design personalized
interventions to prevent disease from occurring.
Yet despite these medical advances, the American system of health care is a dissonant
mix of promise and peril. The promise of our current capabilities and research is betrayed
by the daily reality of our health care delivery system. The peril comes in many forms:
the celebrated surgeon who cures a cancer yet fails to recognize a post-op drug allergy;
the primary care physician who fails to recommend a proven life-saving treatment for a
common health problem; the trusted neighborhood pharmacist who can't read a physician's
hasty handwriting on a prescription and dispenses an incorrect drug that proves fatal; the
insurance claims agent who refuses to approve a needed service.
Nowhere is our system's failure made more plain than in the 1999 Institute of Medicine
report showing that as many as 98,000 people die in hospitals each year from medical
error. "Despite the cost pressures, liability constraints, resistance to change, and
other seemingly insurmountable barriers, it is simply not acceptable for patients to be
harmed by the same health system that is supposed to offer healing and comfort,"
stated the report.
Why such a profound disconnect between our abilities and our performance? It's not that
our core values are wrong. Health professionals know it is their special duty to provide
counsel and comfort at the highest level possible, based on the best available knowledge
and resources. They understand that it is not enough to "first, do no harm"
(which we don't yet do well). It is necessary to "always do better." But the
obstacles to quality and safety are deeply imbedded in our health system's focus,
infrastructure, and incentives.
At its leading-edge, the practice of medicine changes rapidly, often outrunning our
capacity to systematically evaluate the impact of these changes on individual outcomes or
disseminate widely what we learn. In addition, many modern interventions are complex,
requiring precise coordination and interaction with multiple providers and intermediaries,
increasing the potential for errors.
To keep pace, efforts to improve quality and outcomes cannot be occasional or
retrospective. They must be an ongoing priority for everyone in the system, including
consumers. Medical safety and quality improvement have to be part of the culture of
medical practice. Institutions and incentives have to be aligned to put patient outcomes
at the top of everyone's priority list.
This requires a realignment of the incentives in our system to promote a focus on
outcomes and information sharing. Evaluation of clinical results and assessment of the
cause of medical errors must be conducted in the context of learning for improvement, not
judging for blame, punishment, or liability. Further, without proper recognition for
achievement of quality goals, even the most dedicated professionals and institutions will
burn out and default to the status quo.
Realigning incentives means reshaping the distorted power relationships among the three
principal stakeholders in our health care system: patients (consumers), health care
providers (doctors, hospitals, therapists), and payers (employers, insurance companies).
We need a new health care balance of power that rewards personal responsibility and
professional accountability, while offering consumers real choice.
For the better part of the past century, control of the system rested largely in the
hands of the providers - the "knowing others" who bestowed their unfathomable
wisdom on passive recipients, the patients. Then, because of runaway costs, the pendulum
swung to domination by the managed care health plans. This swing was misguided. It failed
to account for the fact that just as all politics is local, all health care is personal.
People are the true center of our system and individual experiences are the citizenry's
units of measure. Only by shifting to a people-centered system - with consumers as
well-informed, fully empowered collaborators in their care, with real options and control
over their choices - can our system begin to meet its promise.
Recently, with the popular clamor for a "patients' bill of rights," the power
pendulum began swinging away from managed care. But what we really need is a transfer of
the deed of health ownership. Individuals own their health, not providers or payers.
Consumers have the biggest stake (and are at the greatest risk) in our health care
system's quality performance. Consumers alone are fueled by the passion and urgency that
result from living with the effects of illness, or seeing their loved ones suffer. They
are the engine for change that can drive outcomes improvement, encourage timely use of new
knowledge, and demand mechanisms to evaluate the effects.
To become effective change agents, however, consumers must evolve from passive
recipients to informed partners at the center of the system. To evolve they must be
empowered - with access, information, and choice.
As a first step, consumers should be able to shop for individual health care plans on
the open market, at competitive prices, the same way their employers now shop for group
plans. But to do this, consumers need control of their health insurance buying power; they
need to know which insurance plans have performed best, for the lowest price, in the eyes
of other consumers. They need to see performance ratings for doctors and hospitals. And
they need access to communities of concern that can help support their decisionmaking.
One of the great promises of the Information Age is the opportunity to shift from a
system that is opaque and narrow to one that is transparent and spacious. This means
changing a health care environment that is characterized by very limited access to
outcomes information and consumer satisfaction reports to one that is information-rich;
from one with dangerously variable quality to one that provides it consistently; from one
with limited choices to one that promotes individual choice.
The Internet, with its unique capacity to enable connectivity between all stakeholders,
can enable such a movement. It allows mass customization so all activities can be centered
on the individual. It further creates opportunities to prospectively generate and
disseminate outcomes data. It provides a platform for health care research and sharing of
new knowledge.
Every consumer should be able to create a personal health space (PHS) on the Internet.
A PHS would be each person's virtual health space, a private online location for storing
(and sharing) personal health information - and a secure portal for accessing everything
else available in cyberspace to enhance health. A person could interact with doctors and
other caregivers; call up information on self-care; find support for healthy behavior
change; and even access the work of top experts in a field. More important, consumers -
like the professionals who serve them - would have access to the latest research on best
practices, performance, and outcomes. Not only would that create a better-informed,
self-caring consumer, but it would have a sobering effect on the care-giving community. No
longer could physicians, for instance, regard their patients as uninformed recipients of
superior knowledge from the doctor; they would have to treat them more like equal partners
in the search for good health.
Issues of privacy and liability are daunting short-term roadblocks to the creation of
truly secure personal health spaces. But they are solvable over time and once they are
resolved, a secure online marketplace can emerge where users will easily access
information about benefits, eligibility for public programs, and performance. Consumers
will be able to track health status and expenditures, reconcile claims questions, know
their rights, and have instant access to external appeals. They will be able to read the
evaluations of insurers, providers, and sellers of health care products and services, and
make purchases online. And they will be able to confidently interact with providers,
caregivers, and their own personal health communities.
A person-centered health system is possible. It will foster a sense of personal control
that will encourage consumers to play a larger role in caring for their own health,
including much needed behavior modifications. (Half of all deaths in the United States
have been attributed to tobacco, drugs, alcohol, diet, motor vehicle accidents, sexual
behavior, and activity patterns, all avoidable through lifestyle changes.) A
person-centered system will also enhance communication between all health stakeholders and
help rebuild our trust and confidence in professionals and health care institutions.
The United States has achieved global leadership in a remarkable number of areas, from
computers to aerospace to biotechnology. But in health care we've failed to marry our
remarkable scientific advances to the techniques of process improvement and continuous
quality enhancement; we have not fully realized the promise of our health system. Where
other industries profited from the quality improvement lessons of industrial theorist W.
Edwards Deming, health care has remained bogged down in old practices and stifled by
historic inhibitions (such as its fear of openly reporting errors for the purpose of
improvement). Yet with restructuring incentives and altered power relationships, there is
no reason why our health care system cannot reach the same levels of efficiency, quality,
and satisfaction as in other industries. When our system changes as dramatically as
medical knowledge has changed, we will realize the potential we have invested so much in
developing.
By putting the individual at the center of the system, we can begin to achieve our
goals: universal access to high quality, affordable health care, and the opportunity for
everyone to achieve optimal health-related quality of life and function.
