Seeking Health Care Information: Most Consumers Still on the Sidelines

Issue Brief No. 61

March 2003

Ha T. Tu, J. Lee Hargraves

Despite the widespread belief that Americans eagerly pursue health information -- particularly through the Internet -- a majority of the U.S. adult population in 2001 did not seek out any information regarding a health concern, according to research by the Center for Studying Health System Change (HSC). Rather than browsing the web, the 38 percent of Americans who did gather health information more frequently turned to conventional sources like books or magazines. Individuals managing chronic conditions were somewhat more inclined to look for information, yet over half of them did not do so. Education stands out as the primary factor explaining variations among individuals. Those holding a college degree are twice as likely to pursue health information compared to people lacking a high school diploma. As consumers increasingly face the burden of navigating trade-offs between the cost, quality, and accessibility of care, reliable and comprehensible information will be essential for enabling consumers to play active roles in overseeing their own health care.

Empowered Consumers in a Changing Health System

Contradicting portrayals of American consumers diligently investigating personal health concerns, a 2001 survey of U.S. households revealed that just 38 percent of adults, roughly 72 million individuals, had sought health information during the preceding year from a source beyond their physician. By contrast, close to two-thirds of American adults (62%) did not seek any health information at all, pointing to major challenges ahead in helping consumers understand the trade-offs among the cost, quality, and accessibility of health care.

Motivated primarily by worries over rapidly escalating health costs, employers have been taking measures to make consumers more conscious of the actual costs of care.

As an illustration, the newest health insurance product -- the consumer-driven health plan -- is built on the premise that consumers will be sufficiently motivated and knowledgeable to comparison-shop for the highest quality health care at the most affordable price. Designers of consumer-driven plans picture empowered consumers who weigh the cost of care when choosing which provider to visit or which treatment paths to follow.

A parallel consumer-focused movement, patient-centered medicine, views patients as active and equal collaborators with their caregivers in reaching treatment decisions. More sweeping developments that affect far larger numbers of consumers -- such as rising cost sharing and tiered-provider networks, where patients must decide, for instance, whether to pay more out of pocket to visit a costlier hospital -- also demand that consumers be better informed.

While mainstream media depictions of consumers actively researching health topics and bringing that information to their physicians are commonplace, until now there has been scant reliable national data about the degree to which consumers actually pursue health information.¹

HSC's 2000-01 Community Tracking Study (CTS) Household Survey asked adults whether, over the preceding 12 months, they had searched for or obtained information regarding a personal health concern from various sources other than their physician, including books or magazines, television or radio, friends or family members, and the Internet.

Only one in six consumers went online for health information (16%, or 30 million adults). In comparison, nearly one in four adults relied on books or magazines as their information resource (23%, or 44 million adults), while an additional 20 percent, or 37 million adults, consulted friends or relatives. Just a narrow segment of consumers was highly active in pursuing health information: Approximately one in five adults tapped multiple sources to gather health information.

Some consumers, such as those in excellent health, may have had no urgent need for information, and the 78 million adults coping with chronic conditions like diabetes, asthma, or heart disease² were more inclined to look for health information. Forty-two percent of adults with a single chronic condition and 45 percent of those with multiple conditions sought health information, compared with 35 percent of individuals with no chronic conditions -- a surprisingly modest gap. Even so, more than half of all people living with chronic conditions, or 44 million adults, pursued no health information at all.

Figure 1: Where Consumers Seek Health Information

Note: Categories are not mutually exclusive; respondents could select multiple categories. Source: HSC Community Tracking Study Household Survey, 2000-01

Table 1: Consumers' Information Seeking and Information Sharing with Doctors

The table below presents adjusted means from a multivariate model controlling for differences in personal characteristics including age, sex, race/ethnicity, education, income, chronic conditions, health status, and health insurance type.

Table notes: Table displays adjusted means derived from a multivariate model that controls for differences in personal characteristics, including age, sex, race/ethnicity, education, income, chronic conditions, health status, and health insurance type. * Significantly different from the reference group (R) at the p<.05 level. Source: HSC Community Tracking Study Household Survey, 2000-01.

Level of Education is Key

Among the personal characteristics that influence whether individuals are likely to pursue health information, educational attainment is by far the most significant.³ Information seeking climbs steeply as education level rises: 55 percent of those with a postgraduate education sought health information, compared with just 25 percent of people without a high school diploma. The information gap is even more pronounced for Internet usage: Individuals with postgraduate education are more than seven times as likely as those lacking a high school diploma to use the Internet as a health information resource (29% vs. 4%).

While education appears to have the most powerful effect on information-seeking behavior, other characteristics also play a role. Men are less inclined than women, older consumers are less inclined than younger consumers, and people with lower incomes are less inclined than those with higher incomes to pursue health information. All of these disparities, unlike education, are modest to moderate in scale, with one notable exception: The Internet information gap between elderly Americans and younger adults is substantial. Only 7.7 percent of individuals 65 and older used the Internet to locate health information, versus 19.3 percent of those aged 18 to 34.

The overall probability of seeking health information does not differ by race/ethnicity once other personal characteristics are taken into account. However, minority consumers are somewhat less likely than white consumers to turn to the Internet as a health information source.

Passive consumers -- those who do not seek health information on their own -- may depend on their physicians to supply all the information they require. Indeed, elderly consumers and those with less formal education -- two of the groups least disposed to actively seek information -- tend to place greater trust in their doctors.⁴

Figure 2: Education Level and Information-Seeking Behavior

Note: "Any information" includes use of the Internet to find health-related information. These percentages were adjusted for other consumer characteristics shown in Table 1. Source: HSC Community Tracking Study Household Survey, 2000-01.

Sharing Information with Doctors

Among the 72 million consumers who looked for health information during the previous year, only one in five brought the information up with their physicians. Seventeen percent of information seekers had no doctor visits in the preceding year, and the remaining 63 percent did visit their doctors but chose not to raise the topic of health information they had found.

When examining the smaller subset of consumers who both pursued health information and visited their physicians, 24 percent mentioned the information to their doctors. Two consumer characteristics had a notable effect on the likelihood of sharing health information with physicians: the patient's level of education and the number of chronic conditions -- the same factors most strongly linked to seeking health information in the first place. Among other demographic traits, being male, elderly, and African American were all associated with a reduced likelihood of discussing health information with doctors.

Some Consumers Harder to Reach

While some consumers actively gathered health information, a majority of American adults sought no health information over the preceding year. Even among individuals with chronic conditions, who might be expected to have the greatest motivation to look for health information, 56 percent pursued none.

Roughly 32 million people, or 17 percent of all adults, neither sought health information nor visited a doctor in the preceding year. And 9 million adults had health problems -- either reporting a chronic condition or fair or poor health status -- yet did not see a physician and pursued no health information. These consumers tend to have less education and lower incomes and are disproportionately uninsured, male, and from minority groups compared to consumers who both sought information and saw a doctor. These hard-to-reach individuals will face a clear disadvantage in a health care system that demands greater consumer participation unless proactive education strategies are specifically directed toward them.

Implications for Policy Makers

Health care information can cut both ways, and a great deal hinges on the credibility and intent behind the information. Direct-to-consumer pharmaceutical advertising, for instance, is frequently cited as a driver of escalating drug costs. The rapid expansion of e-health as an information channel is also noted as a potential contributor to growing consumer demand for various tests, procedures, and prescriptions, which may in turn push health care costs higher. Some consumers, including the so-called worried well, may pursue too much health information and fuel demand unnecessarily.

Recent research, however, indicates that better-informed patients tend to opt for more conservative treatment approaches for certain conditions,⁵ suggesting that the assumption that greater consumer education leads to increased demand for expensive care may be unfounded. To assist consumers in making well-informed decisions about the trade-offs among the cost, quality, and accessibility of health care services, policy makers could take a proactive role in encouraging the development of credible and understandable information.

Consumer-centered approaches are likely to work best for consumers with higher education levels who are skilled at seeking and using health care information. People with at least a college degree make up only about a quarter of the American adult population, so the most receptive audience for consumer-oriented strategies may be limited. Yet even a minority of informed and empowered consumers could trigger shifts in the health care system that would benefit all consumers.

Many consumer-oriented approaches, especially consumer-driven health plans, depend heavily on Web-based tools to educate consumers.⁶ Yet few consumers currently use the Internet to find health information, and Internet access and proficiency differ widely across consumer groups. Directing information toward populations such as the elderly and those with less education will require delivering information through multiple channels, with the Internet representing only one component. Additional targeted efforts, such as making complex health information accessible and comprehensible to diverse groups, will be necessary if passive consumers are to become empowered consumers actively engaged in managing their own health care.

Data Source

This Issue Brief presents findings from the HSC Community Tracking Study Household Survey, a nationally representative telephone survey of the civilian, noninstitutionalized population conducted in 2000-01. Data were supplemented by in-person interviews of households without telephones to ensure proper representation. The survey contains information on approximately 60,000 people, and the response rate was 59 percent.

Notes

1. In a 1999-2000 survey of California residents, 38 percent of consumers reported actively looking for health information -- the same percentage found in the CTS survey results reported here. See RAND Health, Consumers and Health Care Quality Information: Need, Availability, Utility, California Health Care Foundation (October 2001). An often-quoted survey conducted by the Harris Poll that included only Internet users estimates that 53 percent of all adults sometimes use the Internet to look for health information. This survey, however, had not only a very small sample size (707 respondents) but also a nonrandom, nonrepresentative sample, consisting only of Internet users. See www.harrisinteractive.com/harris_poll/index.asp?PID=29, accessed Jan. 28, 2003.

2. Adults in the CTS Household Survey were considered to have a chronic condition if they had been diagnosed with at least one of 11 conditions and had seen a doctor in the past two years for the condition. The list of chronic conditions includes asthma, diabetes, arthritis, heart disease, chronic obstructive pulmonary disease, hypertension, cancer, benign prostate disease, abnormal uterine bleeding and depression.

3. Results reported here are derived from a multivariate model (see note to Table 1). Controlling for personal characteristics is important because (a) many demographic factors are correlated with one another, and (b) the need to obtain health information varies by demographic characteristic (e.g., between the young and old).

4. See Web Table No. 2, Issue Brief No. 61, Trust, Age, Education and Seeking Health Information.

5. Flood, Ann B., et al., "The Importance of Patient Preference in the Decision to Screen for Prostate Cancer," Journal of General Internal Medicine, Vol. 11, No. 6 (June 1996); Phelan, Elizabeth A., et al., "Helping Patients Decide About Back Surgery: A Randomized Trial of an Interactive Video Program," Spine, Vol. 26, No. 2 (Jan. 15, 2001); Chapman, Gretchen B., Arthur S. Elstein and Kevin K. Hughes, "Effects of Patient Education on Decisions About Breast Cancer Treatments: A Preliminary Report," Medical Decision Making, Vol. 15, No. 3 (July-September 1995).

6. Gabel, Jon R., Anthony T. Lo Sasso and Thomas Rice, "Consumer-Driven Health Plans: Are They More Than Talk Now?" Health Affairs, Web Exclusive (Nov. 20, 2002).

Supplementary Tables

Supplementary Table 1: Consumers' Information Seeking and Information Sharing with Doctors, Unadjusted Means

Supplementary Table 2: Trust, Age, Education and Seeking Health Information

Supplementary Table 3: Latino Consumers' Information Seeking and Information Sharing with Doctors, Unadjusted and Adjusted Means

ISSUE BRIEFS are published by the Center for Studying Health System Change.

President: Paul B. Ginsburg

For additional copies or to be added to the mailing list, contact HSC at: 600 Maryland Avenue, SW, Suite 550, Washington, DC 20024-2512. Tel: (202) 554-7549 (for publication information). Tel: (202) 484-5261 (for general HSC information). Fax: (202) 484-9258.

Sources and Further Reading

AHRQ: Health Literacy — Federal resources on health literacy and consumer engagement with health information, central themes explored in this research.

CDC: Health Literacy Resources — Centers for Disease Control and Prevention guidance on health literacy, patient communication, and making health information accessible.

KFF: Health Information Technology — Kaiser Family Foundation research on how Americans use technology and the internet to seek health care information.

NIH Health Information — National Institutes of Health consumer health information portal, one of the most widely used online health resources referenced by researchers.

The Commonwealth Fund — Nonpartisan research foundation promoting a high-performance health system, with extensive research on consumer engagement and health information.