Where am I to go? Use of the Internet for consumer health information by two vulnerable communities.

ABSTRACT

The elderly and African Americans are groups sometimes described as vulnerable or at risk for health complications, and both are communities for whom consumer health information is believed to be important. A review of recent research literature on the information behaviors of these two special populations is provided, and information is presented from the research literature about the use of the Internet by the elderly and by African Americans. Both groups seem to prefer information from their health care providers and/or from established sources, but both groups do seek consumer health information and are increasingly using the Internet for information searches. The characteristics of desirable Web-based consumer health information for these groups are presented, as well as tools or tips that are available for evaluating Web-based consumer health information for these special populations. Finally, specific consumer health Web sites that provide quality information and that are especially useful for the elderly and for African Americans are identified.

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In order to understand the use of Internet-based consumer health information by vulnerable groups, it is helpful to look at current research and data on specific information behaviors and Internet use by two special communities--the elderly and African Americans. These groups are often described as vulnerable and as having distinct consumer health information needs. The formats for, and methods of, disseminating consumer health information via the Internet to these two communities are especially important.

In reviewing the problem, three issues stand out:

* What do we know about the information behaviors of the two special populations, and what is known about their use of the Internet?

* What are the characteristics of desirable Web-based consumer health information for these groups, and what tools or tips are available for evaluating Web-based information for them?

* Can specific Web sites be identified as useful for these groups?

CONTEXT

A recent study done by the Bill and Melinda Gates Foundation pointed out that 95 percent of public libraries in the United States offer free access to computers and the Internet, often providing the only Internet access for residents of the nation's poorest areas. The report went on to posit that "public library computers are reaching the disadvantaged groups consistently identified as lacking technology access and skills" (Bill & Melinda Gates Foundation, 2004, p. 6). Another report on the impact of computers in public libraries states that 31 percent of library computer users wanted to "learn more about [a] medical problem" (Bill & Melinda Gates Foundation, 2004, p. 24). As another research team found, significant percentages of the public are already using the Internet to get health information, and surveys show that the Internet is already a useful vehicle for reaching large numbers of lower-income, less-educated, and minority Americans (Brodie, Flournoy, Altman, Blendon, Benson, & Rosenbaum, 2000; Rainie & Packel, 2001).

Researchers at the Pew Internet and American Life project have pointed out that more Americans look for health information online than see a doctor on a typical day. Search engines are their most common entry point rather than specialized sites such as health portals, despite the growth of the latter. Internet-connected Americans also report that email is used for advice and support, especially for the chronically ill and their caregivers (Fox & Fallows, 2003).

If, as these studies show, health information delivered via the Internet to Americans at home, at work, and in public libraries is commonplace, then it is time to see if similar patterns or activities can be identified in specialized subgroups of Americans. Two groups often identified as being "vulnerable" or "at risk" are the elderly and African Americans. While there is a great deal of consumer health information on the World Wide Web, its presentation is not necessarily useful to a minority community or a community of senior citizens. Family caregivers for these groups may be able to find and use currently available Web-based consumer health information that is culturally sensitive and formatted for an adult audience, but members of the target communities themselves are not well served by much of the Internet-accessible consumer health information.

What is needed is information targeted to minority and elder communities whose members search the Web themselves from home or access the Web through public libraries and other community sites. Web-based information has distinct advantages over more traditional print resources and media: it can be updated instantly and disseminated widely; once a Web page is written and mounted on a server, it is widely accessible without regard to the time or place of the searcher; it also can be printed out easily to serve as an "instant handout" that can be taken home, read and re-read, and posted on a refrigerator door, cupboard, or bulletin board. The same information can be presented in different formats as well to accommodate the needs of those who may have a variety of handicaps and disabilities.

THE ELDERLY

Government data assert that by 2010 the average life expectancy will be up to 86 years of age for a woman and 76 for a man; the first baby boomers will turn 65 in 2010, and "the 55 years and older segment is the fastest growing Internet demographic group" (Bill & Melinda Gates Foundation, 2004, p. 10).

It does seem clear that a distinction needs to be made among groups of elders, particularly because the information behaviors of the young-old and the old-old may differ. The Medical Subject Headings--the MESH, from the National Library of Medicine (NLM)--distinguish between the Aged, defined as those who are 65 through 79 years of age, and those who are Aged, 80 and oven. In 2002 the terms Middle Aged and Adult Children were added to MeSH to further define the populations between 45 and 65 years of age; MeSH defines an adult as a person from 18 to 44 years of age (NLM, n.d.).

Anecdotal reports from the WordSpy document the appearance of new words to describe these shifting generations. McFedries carefully provides citations to the first appearance of terms such as "supercentenarian," "grand boomer," "grey nomad," "elder orphan," "club sandwich generation," and "geezer glut" (McFedries & Logophilia Limited, n. d.).

What Do We Know about the Information Behaviors of the Elderly?

Poor health literacy is common, especially among elderly patients. One researcher claims that the "lack of adequate literacy is twice as common for older Americans and inner-city minorities" (Williams, Davis, Parker, & Weiss, 2002, p. 384). Wagner and Wagner published research in 2003 that found that older adults were no less likely (and were sometimes more likely) than other age groups to use health information. In addition, there are many small studies of information seeking and information behavior in the elderly who have specific medical problems; most conclude that information is sought and that a variety of sources are used. Preferred sources range from health care providers and family members to the mass media and the Internet.

What Do We Know about the Elderly and Their Use of the Internet?

A recent Robert Wood Johnson Foundation report indicates that the elderly are "better-informed through health information on the Internet, interactive TV, and other communications media" (Robert Wood Johnson Foundation, 2002). American Association of Retired Persons (AARP) data front 2004 show that 47.1 percent of the population fifty years of age and over have Internet access at home, compared with less than 15 percent in 1998 (AARP, 2004). Dr. Vivian Pinn, speaking while at the National Institutes of Health in 1998, said that "Assisting senior citizens in utilizing the wealth of health resources available on the Internet can have important ramifications in enabling them to…