Lack of Access or Information Skills

Although Americans continue to go online in increasing numbers, many people still do not have access to the basic tools of the information age. Just 26 percent of households earning less than $35,000 a year have online access at home, for instance, while twice as many urban families earning more than $75,000 do, according to the National Telecommunications and Information Administration. What’s more, the gap between those who have access and those who do not is growing wider, the NTIA says.¹⁵

As responsibility for health care shifts away from doctors’ offices and hospitals and toward homes and communities, differences in access are becoming increasingly worrisome—especially since disadvantaged groups already suffer certain health problems disproportionately. African Americans, for instance, are more likely than whites to have high blood pressure, making them more prone to strokes, kidney failure, and heart disease, according to Janice G. Douglas, chief of the Division of Hypertension at Case Western Reserve’s Department of Medicine, and Kenneth Davis, associate professor of surgery at the University of Cincinnati College of Medicine. Glaucoma develops earlier in African Americans and progresses more rapidly than in whites. Asthma death rates for African American men are three times greater than for white men. About half of Hispanic women and African American women are overweight—a risk factor for diseases such as high blood pressure and diabetes. And African Americans currently account for 57 percent of new HIV infections each year.¹⁶

Addressing the access problem will require more than installing hardware. Even many people with access to online resources lack the skills to use health information proactively. People who use the Internet to gather information about health have higher incomes and are better educated than most Internet users, let alone the population at large, according to a 1997 survey by the Emerging Technologies Group of Find/SVP. They also are more likely to visit the Web on a daily basis and to use search engines and email. ¹⁷

For the millions of people who are not as deft with the Internet, today’s information-intensive health care system can be confusing and frustrating. Electronic health care information can be poorly organized, difficult to understand, and impossible to evaluate. Marc Fisher, a Washington Post reporter who ventured into cyberspace to learn about a rare disorder afflicting his son, was overwhelmed by “vast electronic archives of medical arcana.” Search engines, he said, were as likely to direct one to “a fellow sufferer’s recitation of home remedies, a pharmaceutical company’s stealth advertisement, (or) an out-and-out scam” as to legitimate educational resources.What’s more, Fisher found little comfort in support groups, which he said offered “an utterly unscientific, irrational collection of tales of woe.”¹⁸

Unreliable Information

The success of Information Age health care will depend to a large extent on whether the information becoming available over emerging electronic networks is both accurate and responsive to the needs of everyday people. Substantial gains have been made on this score, but more work needs to be done.

On the World Wide Web, information presented by prestigious research institutions exists side by side with self-serving commercial sites and outright scams. A search for information on Attention Deficit Hyperactivity Disorder (ADHD), for instance, might lead to the National Institute of Mental Health (NIMH), which offers a highly informative, 44- page booklet explaining the nature of the affliction, the challenges involved in diagnosing it (and avoiding incorrect diagnoses), and the admittedly imperfect strategies for treating it. But the search also might lead to the Feingold Association of America, which blames the problem on salicylates, artificial colors, and artificial flavors in foods. Without offering a scientific justification, the association also links these substances to numerous other disorders, including poor self control, workaholic habits, nervousness, inability to follow directions, seizures, ear infections, asthma, bedwetting, nightmares, and more.¹⁹

The NIMH booklet says the cause of ADHD is not known and drugs can treat symptoms but not cure the condition.The Feingold Association, however, offers—for a price—to tell customers how to modify a suffering person’s diet to avoid the substances it asserts are at the root of their problems. Unfortunately, while the NIMH report may not be exactly what a worried parent would want to hear, critics claim the Feingold diet has no scientific basis. “Carefully designed experiments fail to support the idea that additives are responsible for such symptoms,” asserts Steve Barrett, a doctor and author of the Web site Quackwatch.²⁰

As the name of his Web site suggests, Barrett takes aim at what he considers outright quackery. There may be no end to his potential targets. Last year, in the first “International Health Claim Surf Day,” 80 agencies and organizations explored the Internet and found 1,200 sites proclaiming mechanical devices that miraculously treat the pain of arthritis, herbal remedies that ward off AIDS, mysterious elixirs that cure cancer, and other potentially false or deceptive advertising health claims. All received warnings from the Federal Trade Commission that advertisers must have reliable scientific evidence to back up their health claims, and that Web site designers may be liable for making or disseminating deceptive or false claims.²¹

Even generally credible sources can convey misleading information. A growing number of health researchers, for instance, rush to publish their findings on the Internet without first undergoing peer review. “Investigators sometimes may be overly enthusiastic about the importance of their observations and even extend their significance beyond what nor-mally would be concluded from the data,” the Mayo Clinic warns. “The Web allows rapid dissemination of scientific data, but it cannot replace the value of objective review.”²²

Bad information can keep people from receiving needed treatment, or worse. “A search under depression may lead you to Web sites that list ways of committing suicide,” the clinic warns. “Some sites selling herbal remedies suggest throwing out all prescription medications, which, for some conditions such as high blood pressure, may be life-threatening advice.” Even if deceptive information does not harm people’s health, it can hurt them in their pocketbooks. Americans spend billions of dollars annually on worthless treatments, according to the National Council Against Health Fraud. The council’s Web site includes a form people can use to report suspected fraud electronically.

Professional Resistance

Although a growing number of health care providers have started using information tools, the industry as a whole has been slow to adopt computer-networking technology. “The health care industry has barely begun even to grasp its possibilities,” The Economist wrote in February 1998. In part, the magazine blamed outdated laws, including state licensing of physicians, which it said hinder efforts by doctors to use electronic net-works to practice medicine across state lines. Others suggest that health plans are discouraged from investing in information technology because employers insist on short-term savings on employee health benefits.²³

In addition, technology advocates say, medical schools generally do not use information tools effectively themselves, or teach students how to use them. Computer networks that deliver the latest medical information into clinical settings could enable students to develop basic knowledge, tap into the most up-to-date research findings, and develop clinical skills all at the same time—an approach that many educators believe would lead to deeper and more long-lasting learning. But medical schools usually teach basic, factual knowledge separately from clinical knowledge and skills; students usually spend their first two years in classrooms learning the former, and only then begin their clinical training. As yet, medical schools lack “a solid core of educational ideas about how to use the new media to help people learn,” concludes Joseph V. Henderson, director of the Interactive Media Laboratory at Dartmouth Medical School.²⁴

Lacking training and basic familiarity with information tools, many physicians have a common reaction to the so-called “information revolution.” They are overwhelmed. Earlier in this century, doctors reasonably could be expected to hold all essential medical information in their brains, but that is no longer true, suggests Richard Rockefeller, president of the Health Commons Institute. “If you read two medical journals a night all year, you’ll end the year needing 800 more years to catch up on everything that was published since,” Rockefeller observed during the 1997 Partnership for Networked Consumer Health Information Conference, which was spon-sored by the U.S. Office of Disease Prevention and Health Promotion.The Health Commons Institute, which is based in Maine, promotes the use of computerized information tools in clinical care.²⁵

The increased public availability of unfiltered information also can complicate doctors’ relationships with patients. Some physicians complain, for instance, about patients coming into their offices armed with misinfor-mation and cockeyed ideas they picked up in chat rooms and obscure Web sites. Lanyard K. Dial, a family physician in Ventura, California, told the Wall Street Journal about a 65-year-old patient with a history of heart problems who came into the office one day convinced by downloaded information that he wanted to substitute nutritional supplements for his blood-pressure drugs.²⁶

Constraints on Consumers

Consumer-driven reform of the health care system remains more an ideal than a reality. While public disclosure of information on the performance of health providers has proven to be a powerful lever in some cases, market forces generally have been ineffective in producing overall improvements in the quality of care.

In part, that reflects inadequacies in the information available to measure performance. Gaps and inaccuracies are commonplace in the Health Plan-Employer Data and Information Set data, which health plans supply voluntarily and generally are not audited. More fundamentally, experts remain far from certain which measures are the most mean-ingful indicators of quality. “We have a lot more data than we ever had,” says Shoshanna Sofaer, a professor in the School of Public Affairs at the City University of New York’s Baruch College. “But we haven’t figured out yet what subset of measures tell you the most about the quality of a plan.”²⁷

In addition, relatively little of the information currently collected actually reaches consumers. Much of the data collected on health-plan performance currently are never disclosed. Of the roughly 650 managed-care plans in the United States, the National Committee for Quality Assurance last year received HEDIS data from fewer than 450 plans, and fewer than half of all plans authorized public release of information. Some plans may be eager to suppress embarrassing information, but others have serious ques-tions about whether existing measures accurately reflect their performance. Particularly vexing is the fact that information specialists have not yet refined techniques for adjusting performance measures to reflect differences in the underlying health of populations that plans serve. Without adequate risk adjustment, quality data could unfairly cast plans that serve groups with more severe health problems in an unfavorable light.

What’s more, employers and individual consumers make scant use of the performance data they do have. Only about 40 percent of individual consumers with employer-sponsored health insurance even have a choice of health plans or have seen quality comparisons. And even those who have a choice often do not use performance data in selecting plans. More than half of health consumers, for instance, say they follow the advice of friends and family rather than relying on information from independent organizations like NCQA, according to surveys conducted for the Robert Wood Johnson Foundation Employer Health Insurance Survey, the Kaiser Family Foundation, and the Agency for Health Care Policy and Research.²⁸

It may be little wonder, given the lack of stronger incentives, that health providers have been slow to heed performance data. At present, “eighty percent or more of senior managers and physician/nurse providers in the health care sector have accepted the concept of health outcomes measurement as being essential to their operations, but only a small percentage—1 percent to 3 percent—actually use health outcome measurements at the present time,” estimates Al Tarlov, president of the Medical Outcomes Trust, a private group that promotes the use of outcomes research.

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