Consumer-Driven Health Care: A Path to Achieving Shared Goals.

HEALTH IS NOT something bestowed upon you by a system, or a knowing other, it is something you own. Just as all politics is local, all health is personal.

The movement to a more consumer-driven health care system is already under way. It seems the inevitable outcome of the failed 1994 federal Health Security Act and managed care's inability to set us on a course toward our professed ideal of "universal access to high-quality, affordable health care." At the same time, we've seen the widespread adoption of advanced information and communications technologies by other industries to "consumerize" their business models--bringing service providers closer to their users, and reducing cost while increasing quality and satisfaction.

In health care, we face barriers to consumer choice and professional discretion, a return to double-digit inflation, significant lapses and variability in quality, and broad-based stakeholder dissatisfaction from consumers, providers, and payers. In the language of big systems change, we have a "burning platform." Migrating to a more consumer-driven system is, to many in positions of influence, a "compelling vision."

But as stakeholders set upon this journey, together, it is fair to reflect on the challenges we face in achieving shared goals, starting with our expectations and an assessment of our performance against those goals.

The consumer's context

We have the most advanced health care system in the world, in which all problems can be readily explained and quickly solved.

Increasingly, as consumers, we define health through the lens of a popularized view of the possible, reinforced by lay, professional, and political declarations. Public representations of opinion leaders from all sectors, even if misinterpreted or scientifically unsubstantiated, contribute significantly to our understanding.

What is expected from the health care system, when our health or the health of a loved one is threatened, is frequently shaped solely by the limited information we're able to quickly assemble or what we've heard, overlaid by the urgency and angst that attends such moments. And when we seek help, we expect and rely on the health care system to universally and unerringly achieve the ideal. Very often our expectations are unmet. Very often our expectations can't be met. As health is context and subtext for everything we do and all we hold dear, is there any wonder why we take concerns about our health, health care system, and health policy so personally?

The promise

Rapid advances in medical knowledge and technologies will soon lead to new prevention strategies, earlier diagnosis, better treatment, and cures for our most burdensome diseases.

The age of biology is upon us. In just the past two decades, we have gained important know-how regarding the prevention of disease and the application of new technologies to aid in early diagnosis and treatment of illness. Further, as a result of critical public investment in basic research, we have witnessed breathtaking advances in our fundamental understanding of the processes of life, health, and illness. This knowledge, coupled with the use of new tools developed in both the public and private sectors--including genetic engineering and high-throughput drug design--puts us on the threshold of solving many life-threatening and life-limiting health problems.

We can anticipate within the first decades of the new millennium being able to:

* Grow patient-specific replacement organs

* Correct serious metabolic abnormalities

* Selectively attack even advanced cancers

* Develop vaccines to prevent emerging infectious illness, as well as autoimmune diseases, like multiple sclerosis, Type 1 diabetes, and lupus 

* Regenerate severed nerves or obstructed blood vessels 

* Prevent degeneration of the brain in Alzheimer's or Parkinson's disease 

We will even be able to create genetic profiles of individuals to allow us to better predict risk of illness well before there is any clinical evidence of disease, and design personalized interventions with higher likelihood of success.

The problem

Notwithstanding what will be possible tomorrow, we don't even apply what we know today, broadly, consistently, safely, or effectively.

Unfortunately, the promise of our current knowledge and capabilities and the hope fostered by research progress is betrayed by the day-today reality of our health care delivery system and our own behavior.

In his important chronicle of the state of American medicine in 1910, Abraham Flexner wrote:

One of the problems of the future is to educate the public itself to appreciate that very seldom, under existing conditions, does a patient receive the best aid which it is possible to give him under the present state of medicine. [1]

Ninety years later, the same can still be said. For example:

* Medical errors are estimated to cause 98,000 deaths per year (twice the number caused by breast cancer) and more than 1 million injuries.

* Although the practice of prescribing beta-blocker drugs after heart attack has a solid base in science, Medicare data from New Jersey revealed that only 20 percent of eligible patients received this therapy. The consequences are devastating--with those not receiving the drug demonstrating a 20 percent greater rate of re-hospitalization and a 43 percent greater mortality rate.

* A woman with early stage breast cancer in Pittsburgh has an eight times greater likelihood of being treated with a radical mastectomy (versus breast-conserving surgery and radiation therapy) than a woman with the same clinical presentation in Sacramento for no known medical reasons. Which is worse, being rushed out of the hospital after mastectomy, or unnecessarily losing a breast in the first place?

* Twice as often as not, people with diabetes fail to be referred to eye doctors for needed yearly exams (diabetes is the leading cause of adult blindness) or have essential foot exams (diabetic ulcers are the leading cause of non-traumatic amputations) or receive what is generally considered essential assistance with monitoring their blood sugars and learning how to better manage their disease to prevent complications.

* For Americans with cancer, there is too often a wide gulf between the ideal and the reality of their experience with cancer care.

* Despite recommendations that Medicare enrollees be re-immunized against pneumococcal pneumonia at least every ten years, less than 10 percent of physicians and/or health systems comply.

* Fecal occult blood screening conducted every one to two years can reduce cancer deaths in older individuals by almost one-third. Yet the percentage of Medicare enrollees receiving annual screening ranges from only 2.4 to 22 percent.

The 1998 Institute of Medicine "National Roundtable on Healthcare Quality" sums it up this way: At its best, health care in the United States is superb. Unfortunately, it is often not at its best.... Serious and widespread quality problems exist throughout American medicine [and] the burden of harm conveyed by the collective impact of all our health care quality problems is staggering.... These problems, which may be classified as underuse, overuse, or misuse, occur in small and large communities alike, in all parts of the country, and with approximately equal frequency in managed care and fee-for-service systems of care.... Quality of care is the problem, not managed care. [2]

Unnecessary suffering and our inability to capture the full benefit of our health knowledge cannot be blamed exclusively on the failings of our health care system, however. As individuals, we too are responsible. In fact, the most promising ways to prevent chronic illness and injury lie in assisting individuals to change personal health behaviors.

Smoking alone contributes to one out of every five deaths in the U.S., including 150,000 deaths per year from cancer, 100,000 from heart disease, 23,000 from stroke, and 85,000 from lung diseases. Failure to use seat belts and driving under the influence of alcohol contribute substantially to the 41,000 deaths due to motor vehicle accidents each year. Physical inactivity and a high-fat, high-calorie diet (often deficient in fiber and important nutrients like calcium) contribute to heart disease, cancer, diabetes, and osteoporosis. High-risk sexual practices and intravenous drug use increase the risk of Acquired Immunodeficiency Syndrome. Indeed, approximately half of all deaths in the U.S. may be attributed to tobacco, drug and alcohol use, diet and activity patterns, motor vehicle accidents, and sexual behavior, and are, therefore, potentially preventable by changes in health behaviors.

The challenge

To focus on shared goals and use consumer power to promote evolution to not just a consumer-driven but a best outcomes-driven health care system that values and rewards outreach, innovation, and the rapid translation of scientific advances into everyday practice.

Efforts to promote health system process and outcomes improvement are not new. In 1912 Ernest A. Codman, MD, a founder of the American College of Surgeons, was adamant about what he termed the "End Results Idea." Despite short-term advances, Codman saw a confluence of factors halt the diffusion and acceptance of measuring clinical outcomes for learning and improvement. The lack of funding to implement, the challenge to those who held the power in medicine, the lack of pressure for external accountability, and the absence of any real reward for improvement was, what he called, a "toxic mixture." [3]

More recent efforts have tried to shift the forces that have preserved this status quo. One of the most notable was the formation of the Foundation for Accountability (FACCT) in 1995. Its original strategy was to use the economic power of large employers and government purchasers of health benefits to demand improvements in the quality of health care. Together, FACCT members represented the health care needs of more than 80 million Americans. With this much market power, FACCT thought it could introduce significant changes into U.S. health care and create an environment that demanded quality. Unfortunately, it discovered it was wrong. It became clear that even thoughtful and committed organizations, with participation from doctors, health plans, employers, and government officials, were not able to break the quality logjam.

Decades of effort have failed because the remedies to Codman's "toxic mixture" have all lacked a key ingredient: a compelling demand for accountability by the only group with the power to effect real change--consumers. Consumers are the engine for change that can drive outcomes improvement, encourage broader and more timely use of new knowledge, and demand mechanisms to evaluate and report the effects. They alone are fueled by the passion and urgency that results from living with the effects of illness, or seeing those they care about suffer. The transition to a consumer-driven system has to be conceived of as a move to a best outcomes-driven system, as defined by consumers, professionals, and scientific evidence. But to participate as constructive and effective change agents, consumers will need good information, decision-support tools, access to resources, and ongoing support from entities they trust.

Path to a cure

The first step along the path to a cure for our ailing system is to put people at the center of the system, and shape policies to help them become owners of their health and their interactions with the health care system. To own their health, consumers will need certain tools (please see the Consumer Tool Kit sidebar on page 12)

The view of consumers as passive recipients of health bestowed upon them by a knowing other must evolve to that of informed partners in the center of the health care system, with the responsibility and means to participate in promoting their own well-being, as well as system improvement. To do so, consumers must be allowed the opportunity to take control of their health insurance dollars and participate, if they choose, in an insurance and health services market that provides choice, as well as the equivalent perks offered to large purchasers. Universal access to new knowledge and communities of shared concern is also essential--consumers, as well as professionals, must have easy access to expert distilled analyses of information that render it useful for individual decision-making.

Further, a secure environment must be established in which consumers can give researchers and providers feedback on outcomes and their experience, thus enabling prospective evaluation of health system effectiveness. Implementation will require reconciling legitimate privacy and liability concerns, while recognizing that in order to achieve a better functioning system and better health for everyone, all parties must be willing to share their experience. It will be critical that the context in which this information exchange takes place is one of learning for improvement, as opposed to judgment for blame, punishment, or discrimination.

The Internet, through its unique capacity to enable connectivity between all stakeholders, is the logical platform for such an undertaking. A health market space can evolve where willing buyers and sellers of services can interact in an environment focused on health and in which individuals can easily access information about benefits, eligibility for public programs, and plan and provider performance. Within the confines of a secure "personal health space," consumers will be able to:

* Purchase health insurance

* Track their benefits and claims

* Access information on self-care and best practices

* Gain support for healthy behavior change 

* Connect to leading experts

* Share with their providers what they have learned and how they are doing

This collaborative approach not only promotes continuity, satisfaction, and quality of care, but it also allows consumers to meet their obligation to consistently provide feedback regarding the outcomes of care, thereby contributing to practice improvement. Shared decision-making between consumers, providers, and outside experts would be facilitated, enabling consumer choices regarding diagnostic and treatment options to remain consistent with best evidence and practices, while respecting consumer values, preferences, and regional competencies.

Achieving our goals

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 realize our full potential. By putting the individual consumer in the center of a best outcomes-driven system, we can begin to achieve our shared goals: universal access to high quality, affordable health care, and the opportunity for everyone to achieve optimal health-related quality of life and function.

Acknowledgement

The author wishes to thank the following people, peers, and colleagues for their contributions to the context and thinking represented by this article. The moms and dads and volunteer leaders of the Juvenile Diabetes Foundation, Laura Adams, Dave Kendall, Tom Munnecke, David Lansky, and Jessie Gruman.

S. Robert Levine, MD, is a Founder of MedHelp, Inc. in New York and serves as Chairman of the Clinical Affairs Advisory Committee and member of the Research Advisory Board of the Juvenile Diabetes Foundation (IDE). Founded by the parents of children with Type 1 diabetes, JDF is the world's leading non-profit funder of diabetes research and will provide $120 million to diabetes research this year. He is also Chairman of the Progressive Policy Institutes "Health Priorities Project. "He was a contributing editor of the Spring 2000 special issue of The New Democrat Blueprint: Ideas for a New Century on "Healthcare: Igniting a Consumer Revolution, "published by the Democratic Leadership Council for the 20th Century. He can be reached by calling 212/628-4914 or via email at [e-mail].

References

(1.) Flexner, Abraham. "Medical Education in the US and Canada." Bulletin No. 4, Camegie Foundation for the Advancement of Teaching, 1910.

(2.) "Statement on Quality of Care," Institute of Medicine National Roundtable on Health Care Quality, Mark Chassin, MD, MPH, MPP, and Robert Galvin, co-chairs and members of the National Roundtable on Health Care Quality, September 16, 1998.

(3.) Donabedian A. The End Results of Health Care: Ernest Codman's Contribution to Quality Assessment and Beyond. Milbank Quarterly. 189; 67(2), 257-67.

KEY CONCEPTS

* Consumer-Driven Health Care

* Best Outcomes-Driven Health Care

* Meeting Consumer Expectations

* Consumers Owning their Health

* Breaking the Quality Logjam

* Rapidly Translating Scientific Advances

* Creating "Personal Health Space" on the Internet

Consumers are the driving force for a transition to a best outcomes-driven health care system that values and rewards outreach, innovation, and the rapid translation of scientific advances into everyday practice. They are the engine for change that can drive outcomes improvement, encourage broader and more timely use of new knowledge, and demand mechanisms to evaluate and report the effects. Consumers alone are fueled by the passion and urgency that results from living with the effects of illness, or seeing those they care about suffer. This best outcomes-driven system will need to be defined by consumers, professionals, and scientific evidence. But to participate as effective change agents, consumers will need good information, decision-support tools, access to resources, and ongoing support from entities they trust. By putting the consumer in the center of a best outcomes-driven system, we can begin to achieve our shared goals: universal access to high-quality, affordable health care and the opportunity for everyone to achieve optimal health-related quality of life and function.

Figure 1 A Consumer Tool Kit

Government, providers, and payers can catalyze movement to a consumer (best outcomes)-driven system by adopting policies and clinical approaches, as well as developing products, that provide consumers with the tools they need to own their health. This health consumer's tool kit includes:

1. Personal buying power--in order for the system to truly respond to consumer needs and come closer to acting like a real market, consumers must control their health care and insurance buying power and have a direct connect with the real value of the services they are receiving.

2. Health care quality information--Quality counts, quality varies, and consumers can only make good choices about where and from whom they seek care if they have easy access to information on what they should expect and can compare provider performance against this standard.

3. Someone to trust--the high touch in high tech medicine: Community resources, public and Private, that help consumers understand and access what they need from the health care system.

4. A "personal health space"--a secure place on the Internet where individuals can keep and control access to their health records and confidently communicate with providers, world-class experts, and other consumers with similar problems. This is where they can get access to the information and support they need to take specific actions to improve their health.

5. Robert Levine