So he turned to the Internet, where a quick search led him to the University of Pennsylvania’s Onco Link, a respected source of information on cancer. He soon was thoroughly versed on the disease, knowing not only which chemotherapy regimen he preferred, but the wholesale prices for the medications involved. Later, he used the electronic Hodgkin’s Disease Mailing List to commiserate with other people undergoing the rigors of chemotherapy, and he collected some information his doctor never mentioned (such as why his urine suddenly turned red—a harmless side effect of chemotherapy) from Web sites like “Mike’s Lymphoma Resource Pages.”

Six months later, the saga ended happily. An MRI scan showed he was in full remission. And there was a bonus. Fleishman, who hadn’t even known where his liver was when he first became ill, now knew a lot more about health. “When I padded out of the magnetic resonance imaging machine in my socks and a hospital gown, and the imaging technician pinned up the image of my insides—my cancer-free insides—I could point to the liver without any hesitation,” he proudly recalls in a personal account he wrote for the New York Times.¹

Increasingly, people like Fleishman are taking charge of their own health care. Armed with the latest information on advances in medicine, empowered consumers are collecting tips on how to care for themselves, developing a better understanding of their diagnoses, and making more informed choices about their treatment options.With email and electronic bulletin boards, they are finding peers to share both emotional support and practical advice. Some even are going online to check the qualifica-tions of their health care providers.

This is more than an enjoyable pastime. Electronic health information may help Americans address three sets of problems that have plagued our health care system for years: high costs, uneven quality, and gaps in access.

The cost problem is well known: Americans spent $1.1 trillion on health care in 1997, an amount equal to 13.5 percent of the Gross Domestic Product, according to the Health Care Financing Administration. Per capita spending for personal health services totaled $3,925—about $1,000 more than would be expected on the basis of income alone, judging from comparisons with other countries, according to the New England Journal of Medicine.²

The quality of health care is more difficult to measure, but on that score too, Americans may not be getting their money’s wor th. Summarizing exhaustive research, the President’s Commission on Consumer Protection and Quality in the Health Care Industry in 1997 said that the United States suffers serious underuse of some services and overutilization of others. Almost one in four children does not receive appropriate immunizations by 18 months of age, for instance. One-third of all women over age 18 have not received pap smears in the previous three years, while 16 percent of women undergo clinically inappropriate hysterectomies. Between 10 percent and 35 percent of hospital admis-sions are inappropriate, according to the report.³

For the past 20 years or so, insurers, employers, and policymakers have all looked to managed care to find the right balance between cost and quality of medical services. But many Americans have come to believe that health maintenance organizations and other forms of managed care plans have sacrificed quality to control cost. As a result, numerous legisla-tive proposals are springing up to dictate what services health plans must cover—requiring minimum hospital stays for new mothers or for women who have had mastectomies, for instance.

This backlash against managed care could have unintended conse-quences: if regulatory proposals force health plans to raise their rates, many employers would drop health benefits; that, in turn, could swell the ranks of the uninsured. Already, some 43.4 million Americans, or 16.1 percent of the population, lack health coverage. The Lewin Group, a consulting firm, estimates that a one percent increase in employer health insurance premiums would result in 400,000 people losing their coverage, according to an analysis by the Employee Benefit Research Institute (EBRI), a Washington-based think-tank.⁴

Information strategies may offer a solution to this dilemma. By collecting new types of data and providing it to the myriad participants in the health care system—everyday citizens as well as professionals—we may be able to improve the quality of care without increasing costs or increasing the ranks of the uninsured. This pleasant prospect arises from three distinct trends, all of which involve information. First, medical researchers are producing information that promises to improve the quality of care. Second, policymakers are looking to inform consumers to use their buying power to produce a more responsive and effective health care system. And third, consumers themselves are using information to assume more direct responsibility for their own health.

More Effective Medical Care

Almost daily, the news media bring reports of wondrous advances in medical research and genetics. But an equally important transformation in health care has received far less notice. “Owing more to laptops than lab coats, it is an information revolution, driven by the goal of finding the most appropriate and effective therapy for each individual patient,” says Michael Millenson, a senior analyst in the health and welfare consulting practice at William M. Mercer, Inc.⁵

“Evidence-based medicine” or “outcomes research,” as the movement is known, seeks to develop and use information to make the daily practice of medicine more of a science and less of an art. Its tools range from randomized clinical trials to statistical analysis of outcomes of different medical treatments. Already, it has profoundly affected the health care system. It has demonstrated, for instance, that preventive care such as immunizations and early screening procedures for chronic illnesses leads to better health and lower long-term medical costs at the same time.

Surprisingly, outcomes research is still relatively new. As recently as 20 years ago, Millenson notes, fewer than half of all medical treatments had been validated by clinical trials. Even today, there is little hard evidence about the implications of many treatments. No completed clinical trials have determined, for instance, whether men with prostate cancer have better prospects for survival if they undergo radiation or surgery rather than engage in simple “watchful waiting,” according to the Center for the Evaluative Clinical Sciences at Dartmouth Medical School.⁶

Partly because of insufficient outcomes research, medical practices vary widely and inexplicably from region to region. Surgery rates for early-stage prostate cancer, for instance, vary more than ten fold between different parts of the country. In Sun City, Arizona, eight percent of all Medicare patients are admitted to intensive care units at some point during their last six months of life, compared to 47.6 percent of Medicare patients in Sun City, California.⁷

Such variations appear to be unrelated to the actual needs of patients, says John Wennberg, director of the Dartmouth center. Instead, they reflect differences in the availability of specialists and facilities, as well as the varying assumptions, priorities, and unscientific attitudes of physicians and health plans. “Doctors often form opinions based on hunches and professional interests,” says Dr. Wennberg. “In health care, geography is destiny.”

Today, though, a growing number of studies are helping to put decisions about medical treatment on a more solid scientific footing. The President’s Commission on Consumer Protection and Quality in the Health Care Industry reports that the average number of Medline citations on randomized controlled trials increased from 509 annually between 1975 and 1980 to 8,636 a year from 1993 through 1997.These studies, in turn, have led to a dramatic proliferation of practice guidelines spelling out the most appropriate treatment for various medical conditions. Some 454 guidelines were published annually between 1993 and 1997, compared to just one a year between 1975 and 1980. The American Medical Association (AMA) lists 1,700 separate guidelines in its Directory of Clinical Practice Guidelines.

To help medical practitioners keep ahead of the enormous growth in information, the federal Agency for Health Care Policy and Research joined hands with the AMA and the American Association of Health Plans to create a National Guideline Clearinghouse, which publishes various clinical guidelines on the Internet, along with abstracts, summaries, and comparisons.

Enlightened Consumers

As promising as these undertakings are, another relatively untapped resource—patients themselves—may prove even more important for health care in the Information Age. Policymakers increasingly hope that educated consumers will become a driving force for improvements in the quality of health care.

If consumers are equipped to choose between competing health plans and providers, the theory goes, they will flock to those who provide the best care at the lowest price. Banking on this proposition, a number of large employers—including the federal government, the California Public Employees Retirement System (CalPERS), General Motors Corp., and GTE Corp.—now offer employees a choice of health plans. At the same time, the Health Care Financing Administration is moving to ensure that Medicare recipients are offered an array of health plan options. And numerous health plans themselves, responding to demands from consumers (and in some cases pressures from doctors), are expanding the choice of doctors and hospitals available to their customers.

“Retail health plan competition—the holy grail of public policy and market theory in the 1990s—creeps ever closer,” writes Robert Cunningham, editor of Faulkner & Gray’s Medicine and Health Perspectives.⁸

For the market mechanism to work, consumers must have reliable information comparing health plans and service providers. As the Institute of Medicine stated in a 1996 report on federal efforts to expand choices for Medicare recipients, “Without adequate, comparable and timely information, it is not possible to exercise informed choice.”⁹

In fits and starts, Americans are developing an information system to meet this need.The Agency for Health Care Policy and Research, working with the RAND Corp., Harvard Medical School, and Research Triangle Institute, has developed the Consumer Assessment of Health Plans Study (CAHPS), a survey instrument used to gauge customer satisfaction with different health plans.

The National Committee for Quality Assurance, an industry-supported, nonprofit group based in Washington, DC, created the Health Plan-Employer Data and Information Set (HEDIS), a database that shows how health plans compare on such performance measures as their rates of immunizations, well-baby visits, prenatal care and post-delivery check-ups, screening for breast and cervical cancer, use of beta-blockers for heart attack victims, eye exams for diabetics, and more.

Another accreditation organization, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), reviews hospitals, nursing homes, and other health care facilities using a variety of standards relating to patient care and management. A number of private consulting firms also rate health plans on behalf of large employers.

Some tools also help people assess individual providers.The American Medical Association maintains a database on the training, specialties, and board certification of many doctors. Similarly, the American Board of Medical Specialties informs consumers on its Web site and via a toll-free telephone number whether a doctor is board certified.

Public disclosure of quality measures can make a difference. Within one year of the time the Missouri Department of Health published a consumer report on obstetrical services, for instance, half of all hospitals in the state had taken action to reduce their rate of Cesarean-section births and address other issues.Three years after the National Institutes of Health issued guidelines recommending use of anti-inflammatory therapy for treatment of persistent asthma, 82 percent of physicians began promptly prescribing corticosteroids for patients with asthma, compared to 21 percent previously. And the in-hospital death rate for patients undergoing coronary-bypass surgery fell more than 30 percent in the seven years after the State of New York started gathering hospital performance data in 1989. ¹⁰

Increased Self-Reliance

Many people want to be more than passive consumers of health services. They want to be active participants in their own care.

This became evident to Michael D’Allesandro, a pediatric radiologist, shortly after he inaugurated the University of Iowa’s 35,000-page Virtual Hospital Web site. D’Allesandro and his associates designed the site to serve two distinct audiences. For health care professionals, the site provides an array of videoclips, multimedia textbooks, case studies, and technical descriptions of hundreds of medical afflictions. For consumers, it offers tips on such topics as when to be immunized or screened for cancer, what to expect before and after surgery, how to conduct a breast self-examination, and what should be included in a proper diet.

Soon after the service opened its electronic doors, the distinction between the professional and patient realms of information started to break down.“We found that patients would read the patient information, and then they would read the provider information too,” says D’Alessandro.

As this example illustrates, the boundaries between experts and lay people are starting to blur. Today’s Internet-savvy patients are coming to their doctors’ offices armed with more information and better questions than the passive patients of the past. Occasionally, patients even tell their doctors about new research findings and experimental treatments, rather than the other way around. “A typical doctor may need to know about 500 different diseases,” D’Alessandro explains.“A patient has to know only one. It’s amazing what patients can learn.”

There is nothing really new about patients playing a leading role in their own care. In the early days of the American nation, family members— especially women—were primarily responsible for caring for the sick; if families needed help, they turned to networks of kin and community, according to social historian Paul Starr. In his landmark study, The Social Transformation of American Medicine, Starr says the “sovereign profession” of medicine did not emerge until the 20th century.¹¹

Even today, most health decisions are made outside the doctor’s office, clinic, or hospital. Dr. Tom Ferguson, author of the book Health Online and the electronic journal Healthworld Online, and a leading proponent of self-help, lists some of the evidence. A U.S. study of 1,200 healthy adults concluded that the average person faces 117 health issues per year, but sees a doctor only once or twice. A British study conducted during the 1970s found that people deal with 79 percent of all their medical problems entirely on their own. Another study reported that 96 percent of patients interviewed in a doctor’s waiting room had sought information or advice, or used self-care, before coming to see the doctor.¹²

Several other factors are contributing to the increased importance of patients as decisionmakers. The growing emphasis on prevention and early screening requires that patients be well informed and responsible. What’s more, well-informed patients can significantly enhance the treatment of many major illnesses, such as heart disease, stroke, diabetes, hypertension, and arthritis.¹³

But self-care is not just for individuals. Self-help groups are springing up everywhere, addressing issues ranging from gambling addiction to Tourette’s Syndrome. Many, such as the National Association of People With AIDS or the Huntington’s Disease Society, focus on particular illnesses and disabilities. Others, such as Families of the Mentally Ill or Survivors of Suicide, address the needs of caregivers and families of the afflicted. Often formed by everyday citizens, these groups offer both patients and caregivers a way to overcome the sense of isolation and depression that often accompanies illness. Participants exchange information, compare experi-ences, and share coping techniques. They also vent their frustrations, and help others. As a result, they instill a sense of hope where once there may have been fear and anger.

Support groups make a measurable difference. Studies cited by the Self-Help Network of Kansas show, among other things, that chronic arthritis patients who join groups control pain more effectively. Women with metastatic breast cancer report milder mood swings and reduced pain—and survive twice as long, on average, as control-group patients. Support groups have also been shown to cut the rate of heart attacks among men, ease anxiety and depression arising from traumatic experiences, and reduce demand for medical services and medication among people suffering chronic mental illness.¹⁴

Electronic communications present new opportunities for the self-help movement, according to Edward Madara, head of the American Self-Help Clearinghouse. Electronic chat groups, bulletin board systems, and online forums are easier to attend than face-to-face meetings, so people can participate even if they lack transportation, have scheduling problems, are disabled, or have 24-hour-a-day caregiver responsibilities. Some online groups also offer participants the option of remaining anonymous even while sharing sensitive information. And electronic meeting places may represent the only opportunity for people with rare disorders to surmount their isolation in their own communities and find similarly situated peers.

Index | Information | Challenges | Barriers | What's Needed | Afterword | Endnotes | Resources