Expanding the Reach and Impact of
Consumer e-Health Tools

June 2006

Chapter 2. Mapping Diversity to Understand Users' Requirements for e-Health Tools (Part 1)

Introduction

It is commonplace to observe that the United States is a diverse society and becoming increasingly so. Diversity has many dimensions including, but not limited to, cultural, economic, educational, and experiential factors (IOM, 2002). The vision for consumer e-health tools proposed in the Preface and described in the introduction (Chapter 1) emphasizes the importance of diversity and user-centric approaches.

At heart, the matter of consumer engagement with e-health tools is an issue of human communication mediated by technology, and the principles of effective communication practice must inform the design and use of tools. The strategies needed to realize the vision must be grounded in solid research on population diversity, communication, and ways that user characteristics will affect the uptake of consumer e-health tools by new groups. A more complete picture of users and the factors influencing their use of e-health tools is critical not only to the design of the tools themselves but also to meaningful metrics used to assess the tools, their dissemination, and their effects.

The need for a deep-level understanding of individual, population, and systemic factors affecting e-health tool use is acute in the context of national discussions to eliminate health disparities and improve health literacy (IOM, 2003, 2004). The health disparities and health literacy agendas make clear that critical systemic factors affect the ways people act in relation to their own health and interact with the healthcare system. These influences and their variations from person to person and from group to group have yet to be fully identified and described, and they are not adequately captured by traditional public health models and explanations that use demographic factors as the basis for communication interventions (IOM, 2002).

Digital and information disparities should be a matter of great concern for public health and medicine because many of the same segments that lack adequate Internet access and appropriate health information also have the highest risks of developing, or already have high rates of, chronic diseases (HHS, 2000). Appendix 4, A Comparison of Internet Use and Health Status of Populations That Experience Health Disparities, presents data on health disparities and Internet access. Research on consumer attitudes, perspectives, requirements, and behavior is critical to inform policies that put greater responsibility for personal health management on these at-risk population groups.

Apart from consumer surveys on trends in Internet use, little research to date has analyzed the individual and population factors most relevant for consumer e-health tools, particularly in light of personal health management requirements. Findings of this study that were culled from the scientific literature and interviews with e-health tool developers and leading observers in the field confirm that little consumer e-health research is available, particularly at the subpopulation level. Such research is necessary to inform projections of who will use e-health tools in general, or who will use specific tools, and how the use of these tools will affect their perceived and objective health status (see Chapter 3 and Appendix 1).

For the most part, the research indicates either who is using the Internet for health-related purposes, primarily health-information seeking, or how participants in research studies react to specific e-health tools. The often-overlooked elements in the overwhelming number of studies are the human factors and communication dimensions of e-health tool use. Perhaps because of the nature of online communities and the amount of personal information revealed by users, more studies in this category than any other examined in this report have explored questions of identity, beliefs, motivation, emotional and psychological states, and communication styles. (See Chapter 3.)

Even though demographic factors often provide the basis for the targeting of public health interventions, the interventions themselves rely heavily on influencing communication variables and processes as a means to produce behavior change or other outcomes. The Institute of Medicine’s (IOM’s) Committee on Communication for Behavior Change in the 21st Century questions demographic factors as reliable guides to understanding how individuals and groups engage in and are affected by information and communication (IOM, 2002). The Committee recommends that demographic factors be used to identify the distributions of health benefits and broad intergroup differences, but that these factors not be used as the basis for health communication programs and interventions. The Committee supports an approach that considers the full range of communication factors, including cultural processes, access to information and technology, and life experience.

This chapter uses that IOM recommendation as a starting point to outline a user-based approach to e-health tool design and dissemination. Some of the factors examined are demographic; others are psychosocial and communication-related. Collectively, they create a complex picture of the influences and elements that must be mapped as part of a consumer-centric analysis of the e-health tool phenomenon. Each of these factors may be more or less critical depending on the population and needs being addressed by the tool and the context in which it will be used. These factors, along with ones that have yet to be identified, provide the components for new models and strategies to reach and engage all sectors of the population and enhance the effect of a broad range of tools.

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The Health Literacy Construct and its Relevance for e-Health

Health literacy is emerging as a powerful construct for identifying the environmental and human factors that influence the ways in which people interact with health information and the healthcare system. Health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (IOM, 2004; HHS, 2000). Literacy skills include not only reading and writing prose but also numeracy and use of different types of documents, such as forms. Individual and population health literacy is dependent on a mix of individual and systemic factors, including the communication skills of both laypersons and professionals; lay and professional knowledge of health topics; cultural factors; the demands of the healthcare and public health systems; and the demands of the situation or context. According to recent reports from IOM and the Agency for Healthcare Research and Quality (AHRQ), large amounts of existing print health information are too complex for approximately half of all adults in the United States to understand and use (Berkman, DeWalt, Pignone, et al., 2004; IOM, 2004).

Health literacy is an emerging area of study, and there has been limited reliable research on its many dimensions (IOM, 2004). Estimations of group-level health literacy capacities, for the most part, have been based on two national studies of the population’s literacy skills and numerous small studies of either literacy or health literacy skills (IOM, 2004; Kirsch, Jungeblut, Jenkins, et al., 1993; National Center for Education Statistics, 2005).¹ One recent study did attempt to pool numerous small studies using multiple health literacy assessments and found that these pooled estimates were similar to the findings from the national literacy data (Paasche-Orlow, Parker, Gazmararian, et al., 2005).

Literacy skills are unevenly distributed across the population, similar to education level, income, health status, and Internet access. Literacy rates are lower among older adults and persons of lower education and income (Kirsch et al., 1993; National Center for Education Statistics, 2005). Literacy capabilities affect people who speak English as well as other languages, may impede communication of health prevention messages, and diminish the ability to participate in interventions. Literacy skills also affect how people, particularly those in underserved populations, use the Internet (Baur, 2005; Echt and Morrell, 2003; Zarcadoolas, Blanco, Boyer, et al., 2002).

Individual capacities, however, do not appear to be the most important factor in limited health literacy in a population. Health literacy problems exist in large part because the systems that provide health information and services are unfamiliar and complex, which makes it difficult for many people to understand and use them effectively (IOM, 2004; HHS, 2003). The information that health professionals have created is jargon-filled, technical, and dense; the forms and paperwork are confusing, complicated, and lengthy; and the care process and systems are cumbersome and oriented to professional requirements. As a result, few individuals are likely to ever have all the capacities needed to understand and navigate systems as they currently exist. In other words, system design has created many health literacy problems, and system design must be altered to address the problems.

Example of literacy and cultural factors relevant to e-health tools

It appears that many of the health literacy issues that have been identified in the print environment are being transferred to the electronic arena. As noted in Chapter 3, research suggests that many Internet sites and their content are created in a style and vocabulary too complicated for many segments of the public, erecting a barrier to understanding and communication (Graber, Roller, and Kaeble, 1999; RAND Health, 2001; Zarcadoolas et al., 2002).

The commentary from Adrian Casillas, M.D., highlighted in the box above, illustrates how health literacy factors play out in the design of a consumer e-health tool. It also illustrates how literacy and cultural factors are not the same, even though they may affect the same user groups; they need to be addressed with different remedies. The vignette exemplifies the conscious and ongoing effort required of researchers and developers to understand the meaning of tools and content from the intended users’ perspectives. Dr. Casillas describes the thinking behind his Los Angeles-based public health work with children with asthma, 60 percent of whom are members of Mexican and Central American immigrant families.

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The Key Concept of Meaningful Access

To use e-health tools, people obviously must own or have access to technology, including hardware, software, and Internet connections. This type of basic or physical access to technology, however, has been found to be insufficient to promote or sustain technology use among some groups of users (One Economy Corporation, 2004; The Children’s Partnership, 2000, 2002, 2003). Users may not have the skills or resources they need to use technology; diagnose and solve technical problems; afford continuous service charges; or locate and understand content (Eng, Maxfield, Patrick, et al., 1998). The lack of physical access, skills, or resources creates multiple obstacles that must be identified and overcome.

Consequently, researchers and practitioners working on issues of technology access have developed the concept of “meaningful access” to encompass equipment, Internet connections, skill development, ongoing technical support, and appropriate content, all of which have bearing on the issue of a “digital divide” in society (HHS, 2003). Similarly, the health literacy construct unites the issues of capacities, access, and understanding, although it has rarely been applied to the analysis of technology use (Baur, 2005). Both concepts highlight the importance of understanding users’ capacities and characteristics in light of systemic barriers that inhibit the full exercise of capacities.

Unequal access to the Internet and related technologies has been characterized as a “digital divide”; naturalistic trends toward broader access across the population and targeted interventions to increase access are described as progress toward “digital inclusion” (HHS, 2003). The health objectives in Healthy People 2010 include an objective to increase Internet access in the home, confirming the critical nature of Internet access for the health of the entire population (HHS, 2000). Considerable progress has been made since the late 1990s, when the U.S. Department of Commerce report, Falling Through the Net, called the digital divide “one of America’s leading economic and civil rights issues” (U.S. Department of Commerce, 1999). Nevertheless, segments of the population—primarily defined in existing studies by income, age, language, and disability—still lack access when compared to the segments with the highest rates; income is a key factor in the divide.

Table 1 reports the most current Census Bureau data on Internet access at the total and subgroup levels, using Healthy People 2010 categories and the 1998 baseline data for the Healthy People Internet access objective. Since the Census findings reported in Table 1, survey research from the Pew Internet & American Life Project indicates that broadband is rapidly becoming the new standard at the same time income divisions between broadband and non-broadband users become sharper. Total population use of broadband technologies increased to 53 percent by mid-2005; however, 71 percent of Internet users in households with annual incomes of $75,000 or higher have broadband access, whereas 42 percent of Internet households with annual incomes below $30,000 have broadband (Fox, 2005a).

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Table 1. Households With Internet Access

^aSource: CDC Wonder. DATA2010. . . the Healthy People 2010 Database. Focus Area 11.1. January 2006 edition. http://wonder.cdc.gov/. Centers for Disease Control and Prevention. Accessed February 14, 2006.

^bSource: U.S. Department of Commerce. 2004. A Nation Online: Entering the Broadband Age. www.ntia.doc.gov/reports/anol/NationOnlineBroadband04.htm. Accessed October 12, 2005. Note: The survey is conducted by household, and the data are reported as Internet access from any location by the survey respondents.

^c1997 data source: U.S. Department of Commerce. 2002. A Nation Online: How Americans Are Expanding Their Use of the Internet. www.ntia.doc.gov/ntiahome/dn/nationonline_020502.htm. Accessed March 24, 2006.

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As noted above, the question of access is not simply a matter of having a computer and Internet link; “meaningful access” emphasizes the factors involved in achieving genuine digital inclusion. For millions of Americans, access problems have more to do with their ability to use digital technology and the relevance and appropriateness of the information resources available to them than with their having the right equipment. These other aspects of access are gaining in importance as explanatory factors for the causes and consequences of differences in Internet use and interest among different population segments. A few studies that have examined the role of content, applications, skills, and technical support in generating and sustaining user interest found that some population segments, such as those with low income or limited English proficiency, have limited choices of relevant content (The Children’s Partnership, 2000, 2002, 2003).

The most complete approaches to providing access for diverse user groups, therefore, address not only equipment and Internet access but also skill development, ongoing technical support, and appropriate content. A report from the Kaiser Family Foundation expresses the same ideas by distinguishing between quantity and quality in Internet access (2005). Being connected to the Internet has little meaning in itself if users cannot find relevant content and services. Specific aspects of meaningful access related to audience characteristics are discussed below in this chapter, and Chapter 3 explores the subject in light of existing research on the appropriateness of content.

Although national surveys of Internet access and use provide little detail on the public’s perceptions of technology, some findings suggest diverse attitudes toward, and likely capacities with, technology. Although Internet penetration has increased to its highest levels yet, about 25 percent of the population are not online, primarily because they do not have a computer (University of Southern California [USC] Annenberg School Center for the Digital Future, 2004). Studies suggest that cost is only one obstacle, and not always the most important one, to computer ownership and Internet use. The USC Digital Future study found that only 9 percent of respondents not connected to the Internet reported the cost of technology as the reason. An additional 24 percent reported that they had no interest in being on the Internet, and another 18 percent said they did not know how to use the Internet (USC Annenberg School Center for the Digital Future, 2004).

A small study in San Diego, California, found that psychosocial factors, such as embarrassment at not knowing how to use a computer, were more important than cost in explaining why low-income residents did not purchase computers or were not learning how to use computers at local community centers (Stanley, 2001). Moreover, in this same study, residents reported ownership of other types of technology, such as DVD players and cell phones, which suggests that their concerns were specifically with computers and not technology in general. Research from the Pew Internet & American Life project supports this finding with data showing that technology gaps by racial group and age are not as great for cell phones as for computers (Fox, 2005a).

As noted in the preceding health literacy discussion, a few small studies suggest that persons with limited literacy skills are likely to be among those who do not know how to use the Internet without training and support. The U.S. Department of Education investigated associations among literacy skills, Internet access, and computer use for the first time as part of the 2003 National Assessment of Adult Literacy; results will be released in the second half of 2006 (see http://nces.ed.gov/naal/).

Access to Internet-ready devices such as cell phones and Personal Data Assistants (PDAs) can remedy the lack of a computer. However, the attitude that Internet access is not necessary for daily life may itself become an important source of social division, according to Jeffrey Cole, Director of the USC Annenberg School Center for the Digital Future. He notes that people who live daily life disconnected from the Internet may face real costs—financial and social—not simply inconveniences: “People who do not want to perform those chores (pay bills, send letters, make appointments, and so on) online will find it increasingly difficult and expensive to avoid doing so” (Cole, 2004).

As an increasing number of health plans, employers, and healthcare providers develop Internet-based resources, their beneficiaries, employees, and patients will have fewer real choices about receiving information and services in a nondigital form. Beneficiaries, employees, and patients who do not have Internet access or choose not to use it will find that either they do not have access to vital information and services or they have to rely on intermediaries who will use these technologies on their behalf. The emergence of broadband as a new standard for connectivity and the dependence of multimedia applications, including most e-health tools, on broadband are already creating additional disparities. Broadband makes it more likely that people will use the Internet and for longer periods, which are requirements if people are going to incorporate e-health tools into their routines.

Learning more about the one-quarter of the population who may become isolated by their attitudes toward digital technologies and the options that will be required to continue to serve them is an emerging research and policy issue. Intermediaries or “infomediaries” have been suggested as a solution for some users who do not want to seek out information themselves or use technology directly; this strategy assumes, however, both that the intermediaries have the necessary access and skills and that they are available when and where users need them. These assumptions raise multiple issues for policymaking that future studies should address.

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User Behavior and Health Information-Seeking

Although health is only one reason people use the Internet, approximately 95 million American adults have used it to find health information, most to seek information on a specific disease or medical problem (Fox, 2005b). About one-half of Internet users accessed healthcare information in 2004 (USC Annenberg School Center for the Digital Future, 2004). Experienced Internet users (those with 6 or more years of experience) are far more likely to have used the Internet as a source of health or medical information in the last year than new users (those with fewer than 2 years of experience) (Fox, 2005b; USC Annenberg School Center for the Digital Future, 2004).

Similar to the data on interest in the Internet, these data suggest that long-term Internet users are likely to have integrated the technology in their lives across a broad set of purposes; those new to the Internet may be in the process of discovering purposes for use. Yet, both new and experienced users express similar levels of confidence that they could find health or medical information on the Internet if they needed to (Fallows, 2005; USC Annenberg School Center for the Digital Future, 2004). Although these findings suggest a strong sense of self-efficacy across user groups and perceived value of available information, they do not address different segments’ understanding of and capacities to apply information.

As evidenced by the number of published studies in the peer-reviewed literature, there is a great deal of interest in who is using the Internet to search for health information and for what purposes. The Pew Internet & American Life Project has conducted extensive survey research on the public’s online habits and behaviors, including search behaviors and health information-seeking (for examples, see Fallows, 2005; Fox, 2005b). The Pew Project finds that search engines are the overwhelming favorite method to find information on the Internet; 84 percent of Internet users chose search engines to locate the information they seek (Fallows, 2005).

Table 2 summarizes selected peer-reviewed research studies from the journal literature on Internet health information-seeking. The studies typically were designed to identify relevant factors of use by different audience or user segments. These studies have some utility as guides to the attitudes and interests of different audiences and users, although in most cases the findings are descriptive rather than analytical or explanatory. In general, these studies are most useful to describe how often different groups search for different types of health information and the utility or value of the information for their specific needs. Although the location from which people access the Internet was of interest in the present study, only two research studies included information on this variable (Borzekowski and Rickert, 2000; Smith-Barbaro, Licciardone, Clarke, et al., 2001).

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Table 2. Selected Peer-reviewed Research Studies on Internet Use, Searching Behaviors, and Users’ Attitudes and Interests

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Indicators suggest that many segments of the population are ready to think about new uses of digital technologies for health. Connecting for Health, a public-private collaborative to promote the use of health information technologies, conducted research on public opinions and attitudes about personal health records. The researchers found that although two-thirds of the public had thought very little about accessing their personal health information on the Internet, about half thought that they would like to try it. The study found that, in general, “people often do not consider electronic solutions to their personal health information management needs” (Connecting for Health, 2004, p. 47), but a large number of persons under age 65 are ready at least to consider the idea. One study in Queens, New York, found that a low-income, ethnically diverse patient population reacted very favorably to the use of “smart cards” for basic personal health records (Versel, 2004). Surveys find that e-mail for clinician-patient communication could be a popular use of the Internet, if clinicians were more willing to use it. A Wall Street Journal/Harris Poll finds that although only 8 percent of adults report using e-mail with their physicians, 81 percent either strongly favor or somewhat favor doing so (The Wall Street Journal Online, 2005).

¹The 2003 National Assessment of Adult Literacy from the U.S. Department of Education includes items on health literacy that will be used to compose health literacy scores, but the data had not yet been released when this report went to press.