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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations 6 New Communication Applications and Technologies and Diverse Populations THE CHANGING HEALTH COMMUNICATION LANDSCAPE1 Communication applications and technologies changed dramatically over the 20th century. The telephone did not become a routine means of communication in the United States until World War I (Mandl, Kohane, and Brandt, 1998). In the early years of its use, there was concern that the telephone might harm doctor-patient relationships. Now we accept the telephone as part of everyday life and as an essential part of health care. The committee recognizes that telephone coverage averages about 95 percent for the United States, but noncoverage varies from 1.8 percent in Delaware to 13.3 percent in New Mexico. Telephone coverage also is lower for some population groups, e.g., Blacks in the South, persons with low incomes, and people in rural areas (Cen- 1 We are grateful to David Gustafson and Bernard Glassman for their contributions to this chapter. We also thank Lee Rainie, Director, Pew Internet & American Life Project, for generously sharing information.
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations ters for Disease Control and Prevention Comparability of Data, http://www.cdc.gov; Behavioral Risk Factor Surveillance System, 2000). The evolution of social activities and social relations brought about by the telephone pales in comparison to the communication revolution being propelled by the Internet. Health communication is at the forefront of that revolution. The last decade of the 20th century was distinguished by massive changes in the way people get information, including health information. By the beginning of the 21st century, there were more communication channels than ever before—not only face-to-face, print, telephone, radio, TV, fax, VCR, DVD, and CD-ROM, but also the many options possible through personal and networked computers, including the Internet, with both wired and wireless options. New phrases such as “instant messaging” became part of the global vocabulary nearly overnight. The early 20th century discussions about the impact of the telephone were replaced by commentaries about the impact of e-mail on doctor-patient relationships. Perhaps no other innovation has transformed communication as quickly and with as much reach as the Internet (Lucky, 2000). As Bandura (2001:6) observed, “new ideas, values, behavior patterns and social practices now are being rapidly diffused by symbolic modeling worldwide in ways that foster a globally distributed consciousness.” The growth of new technologies parallels changes over the past half century in the patient role and the patient-physician relationship. Increasingly, patients want to play an active role in making decisions about health (see, e.g., Chen and Siu, 2001; Edwards and Elwyn, 1999). Across a number of health topics, patients say they want to receive as much information as possible (Chen and Siu, 2001; Fallowfield, 2001; Cassileth, 2001; Bluman et al., 1999). Furthermore, whether they want to play an active role or not, the evolution of the health system may force them to play that role to an ever-increasing extent. Physicians and other health professionals may have less time available to follow up aggressively with patients. Patients and their families may assume increasing responsibilities for negotiating their way through the system, obtain-
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations ing prevention information, finding appropriate care, and gaining follow-up advice. This chapter will explore the use of new health communication technologies and new uses of current technologies, with a focus on diverse audiences. We will describe the nature and potential benefits and limitations of these communications, summarize the evidence especially with regard to diverse populations, and recommend several actions to reduce the barriers to their use and to speed access to a range of new communication applications and technologies, including Internet-based applications among all population groups. Our recommendations also include potential research. A caveat is in order: Little research has been published on the experience of diverse populations with these new technologies. The research that is reported generally includes few controlled trials, and many of the samples are still small. In most cases, if there are data on diverse populations, they are in the context of studies that include both diverse and nondiverse populations. Like other good interventions, computer-based applications should be developed and measured with theory as a foundation, as described elsewhere in this volume (Chapter 2). Moreover, they should specify the linkages among cognitive/affective domains, behavioral objectives, and program content (Rhodes, Fishbein, and Reis, 1997). INNOVATIVE USES OF CURRENT TECHNOLOGIES New uses of current and widely accessible communication media, such as print and telephone, have been possible because of computer applications that have permitted content to be tailored to individuals, allowing people to use older tools in new ways. Tailored print communications (TPCs) and telephone-delivered interventions (TDIs) are among the most widely used innovations. The potential of these media for reaching those with and without Internet access, and people with highly diverse linguistic and cultural requirements, should not be underestimated, nor should the challenge of harnessing the new media to reach diverse audiences.
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations Tailored Print Communication TPCs are printed materials created especially for an individual based on relevant information about that person, usually from the person (e.g., by telephone interview or self-administered questionnaire) with or without other data (such as medical records) (Skinner et al., 1999; de Vries and Brug, 1999; Kreuter and Skinner, 2000; Kreuter et al., 2000b). At least theoretically, computer-tailored print materials permit the reach of mass media, with content that is relevant and appropriate to recipients. This is why tailored approaches have been referred to as mass customization. Where generic materials might include a substantial amount of irrelevant content for any individual, tailored materials can provide information needed to modify specific antecedents of behavior change and enhance skills for a particular individual. For example, tailored materials can suggest dietary changes based on the recipients’ eating patterns and preferences. Tailored information is different from personalized information, which may be as simple as putting a name on a brochure, and has no demonstrable impact on behavior change (Kreuter et al., 1999; Kreuter and Skinner, 2000b). Tailored information also is distinct from targeted communication, which is based on the social marketing principle of market segmentation, using group variables such as ethnicity to design special communication to meet group needs. Segmentation is discussed further in Chapters 2 and 3. Tailored interventions range from those that are very simple and tailor only a few variables, perhaps in a letter, to more elaborate tailored booklets based on algorithms that have potentially billions of combinations of pieces of health-related information. Tailoring can range from the most precise algorithm that adjusts individual words and phrases within a sentence to methods that choose whether to include a whole topic (Bental, Cawsey, and Jones, 1999). Some systems allow specific questions to be answered (Buchanan et al., 1995). Many formats are possible, including tailored letters, booklets, calendars, newsletters, games, and church bulletins. The possibilities are nearly limitless, but
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations should be appropriate to particular audiences. Like any good intervention, tailored interventions should reflect participation of potential users at every stage. As with other print interventions, some are designed better than others. Bental, Cawsey, and Jones (1999), Dijkstra and de Vries (1999), Kreuter et al. (1999), Rimer and Glassman (1999), and Kreuter et al. (2000b) provide more detail about how tailored communication is created. Briefly, tailored materials require: (1) identification of relevant individual-level characteristics; (2) a message library; and (3) an algorithm that specifies the decision rules for assigning particular messages to individuals (Dijkstra and de Vries, 1999). A fundamental part of developing TPCs is the creation of a message library that contains all possible messages that could be given to an individual under different conditions (Rimer and Glassman, 1999; Kreuter et al., 1999; Kreuter et al., 2000b). For example, a woman who is thinking about getting a mammogram would get a very different message from a woman who has never considered having one. More than 40 studies of TPCs have been reported, and several summary articles have been published (see, e.g., Strecher, 1999; Rimer and Glassman, 1999; Dijkstra and de Vries, 1999; Skinner et al., 1999). As Table 6-1 shows, reports of TPCs have covered a wide range of health-related behaviors, including diet, exercise, smoking cessation, weight reduction, mammography, prostate cancer screening, hormone replacement therapy, health risk appraisal, and multiple risk behaviors. More recent studies, as well as some that are ongoing, have extended tailoring to new formats and variables, including the use of cultural tailoring (Kreuter et al., in press; Lukwago et al., in press; Lukwago et al., 2001). TPCs that were tested in these studies used many kinds of tailoring based on theories such as the Elaboration Likelihood Method (Petty and Cacioppo, 1979b; Kreuter et al., 2000; Kreuter and Holt, 2001), Stages of Change Model, Social Cognitive Theory, and the Health Belief Model, and using variables such as self-efficacy, perceived susceptibility and risk, as well as barriers and facilitators to behavior change (Glanz, Rimer, and Lewis, in
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations TABLE 6-1 Evidence for the Effectiveness of Tailored Print Communications Significant Outcome by Authora Impact Yes No More likely to be read, recalled, rated more highly, discussed with other people, and perceived as interesting and relevant Brinberg and Axelson, 1990 Campbell et al., 1994,b 1999,b 2002b Skinner et al., 1994 Dijkstra et al., 1998a Strecher, 1999 Brug et al., 1996, 1998 Lipkus et al., 1999,b 2000 Kreuter et al., 1999, 2000b Rimer et al., 1999,b 2002 DeBourdeaudhuij and Brug, 2000 Etter and Perneger, 2001 Nansel et al., 2002b Blalock et al., 2002 McBride et al., 2002b Curry et al., 1995 Bull et al., 1999a Significant main effect or subgroup effect on smoking cessation Dijkstra et al., 1999 Strecher, 1999 Lipkus et al., 1999,b 2000 Velicer et al., 1999 Orleans et al., 2000 Prochaska et al., 2001 Becona and Vazquez, 2001b Etter and Perneger, 2001 Lennox et al., 2001 McBride et al., 2002b Curry et al., 1995 Dijkstra et al., 1998b Campbell et al., 2002b
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations Significant Outcome by Authora Impact Yes No Significant decrease in dietary fat intake Brinberg and Axelson, 1990 Bowen et al., 1992 Campbell et al., 1994,b 1999,b 2002b Kreuter and Strecher, 1996 Brug et al., 1996, 1998 DeBourdeaudhuij and Brug, 2000 Siero et al., 2000b Significant increase in fruit and vegetable intake Brug et al., 1998 Campbell et al., 1999,b 2002b Kristal et al., 2000 Delichatsios et al., 2001 Campbell et al., 1994b Brug et al., 1996 Lutz et al., 1999 Significant effect on weight reduction Burnett et al., 1985 Significant effect on exercise behavior or main effect on those not exercising at baseline Kreuter and Strecher, 1996 Bull et al., 1999a Marcus et al., 2000b Bock et al., 2001 Campbell et al., 2002b Bull et al., 1999b Blalock et al., 2002 Increased adoption of home and car safety behaviors among parents of young children Nansel et al., 2002b Increase use of calcium supplements to prevent osteoporosis among persons thinking about but not appropriately performing the behaviors Blalock et al., 2002
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations Significant Outcome by Authora Impact Yes No Improve decision making about HRT McBride et al., in pressb Significant main effect or subgroup effect on use of mammography Skinner et al., 1994 Rakowski et al., 1998 Rimer et al., 2001, 2002 Valanis et al., 2002 1999b Meldrum et al., 1994b Drossaert et al., 1996 Rimer et al., More accurate assessment of breast cancer risk Lipkus, Rimer, Strigo, 1996 Rimer et al., 2002 McBride et al., in pressb Skinner et al., in press Improved completion of multiple tests needed by women Harpole et al., 2000b Increased adherence to early detection for prostate cancer Myers et al., 1999b Increased adherence to cervical cancer screening Campbell et al., 2002 Improved knowledge about genetic testing and related issues and increase accurate assessment of risk of being a mutation carrier Skinner et al., in press aNote: Only first or first and second author(s) listed here in order to conserve space, co-authors can be found in reference list. bFocuses on or analyzes impact on diverse populations.
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations press). In some cases, pictorial material was tailored, as were variables such as personal risk, self-confidence, smoking characteristics, and specific behavioral recommendations. Very different approaches to tailoring have been used. For example, some studies have created materials that are stage matched and tailored, while others have been tailored entirely for individual items or variables. No reported study has compared the effects of different tailoring systems. Although the data are not unequivocal, most studies have shown main effects or important interactions. In some cases (e.g., Lutz et al., 1999; Lennox et al., 2001), tailored materials outperformed the control group, but were no better than nontailored materials. More research is needed to understand the mechanisms underlying both effective and ineffective TPCs and whether some tailoring algorithms and approaches are better than others. Substantial evidence shows that TPCs are more likely to be read and kept, that they are rated more highly than generic materials, and that they produce changes in knowledge, beliefs, and behaviors. Where they are effective, their success seems to be partly because of the greater level of attention paid to tailored communication (de Vries and Brug, 1999; Kreuter et al., 1999; Becona and Vazquez, 2001). Consistent with the Elaboration Likelihood Method, there is increasing evidence that tailoring causes recipients to pay more attention and to process more deeply, leading to improved comprehension and behavior change (Kreuter et al., 1999; 2000). When combined with a physician message that “primes” patients to pay attention to subsequent messages, TPCs may be especially powerful (Kreuter, Chheda, and Bull, 2000). More work is needed in this area. Specifically, none of the reported studies was designed to answer the following question: Did a particular intervention perform differentially with a diverse population? However, several of the published studies focused on or included analyses of effects on diverse populations (e.g., Campbell et al., 1994, 1999, 2002; Skinner, Strecher, and Hospers, 1994; Rimer et al., 1999; Becona and Vazquez, 2001) (see Table 6-1). The results are encouraging. Skinner and colleagues showed
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations that tailored letters about mammography had a significant subgroup effect on African-American women. Lipkus and colleagues (Lipkus, Lyna, and Rimer, 1999) found that tailored birthday letters and newsletters had a highly significant effect on smoking quit rates among low-income African-Americans, especially men. Campbell et al. (1994) showed that a combination of tailored church bulletins and other culturally appropriate interventions resulted in significant increases in fruit and vegetable consumption in a low-income African-American population. In a study of blue-collar women, Campbell et al. (2002) found increases in several behaviors, including fruit and vegetable consumption, flexibility exercise, and short-term change in fat intake, but no changes in smoking or cervical cancer screening in a worksite program that also included natural helpers. Kreuter, Vehige, and McGuire (1996) reported that a tailored calendar improved the rate at which parents adhered to their children’s immunization schedules. Myers and colleagues (1999) demonstrated that an enhanced intervention composed of telephone and print materials tailored to African-American men with no previous history of prostate cancer resulted in increased adherence to early detection for prostate cancer. Becona and Vazquez (2001) showed that the combination of a standard self-help smoking cessation intervention and tailored letters resulted in a significant improvement over self-help alone for Hispanic smokers, with impressive abstinence rates. Nansel et al. (2002) tested the efficacy of tailored print materials produced for parents to reduce child injury-promoting behaviors in the home and car in a primarily minority sample. McBride et al. (2002) extended previous work on genetic susceptibility and tobacco control by examining the use of feedback about a genetic biomarker of cancer susceptibility to increase smoking cessation in a low-income African-American population. At 6 months (but not at 12 months), there was a significant difference between those who received TPCs with biomarker feedback (19-percent quit rate) versus enhanced usual care (10-percent quit rate). These studies are encouraging. They show that for a wide range of topics, TPCs are efficacious for both white and ethnic minority populations. In
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations one of the few studies that showed an ethnic group disadvantage, McBride et al. (in press) found that tailored materials about hormone replacement therapy were less effective for African-American women than for white women. In many cases, TPCs are more effective when combined with other interventions. Among the most promising are telephone counseling and natural helpers (e.g., Lipkus, Rimer, and Strigo, 1996; Rimer et al., 2002; Blalock et al., 2002; Campbell et al., 2002; Earp et al., 2002). The addition of such components may be especially important in reaching women with lower levels of income and education and in explaining topics that are complex and require informed decision making. More research is needed that examines combinations of tailored interventions with other appropriate interventions. It is important to think about systems of interventions. Telephone-Delivered Interventions TDIs include a range of human-delivered counseling and reminder interventions delivered using the telephone and computer-generated voice response systems. These are often complex interventions that include components designed to motivate people, provide information, and overcome barriers to action. Substantial evidence-based literature documents the efficacy of TDIs across health behaviors, settings, and populations. McBride and Rimer (1999) reviewed the published literature to late 1997, with a special focus on diverse populations. TDIs have a number of variable components that, in combination, yield a broad continuum of applications (Soet and Basch, 1997). From the perspective of the intervener, calls can be initiated reactively—through calls to services or helplines, often with toll-free numbers—or proactively, via outbound calls initiated by trained interventionists. TDIs also vary by service provider (e.g., health professionals or lay staff) and whether they are paid staff or volunteers. They differ in the extent to which the call is scripted, the degree to which the script varies algorithmically with the characteristics and responses of the re-
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations they operate should be examined. Today, most research on behavioral interventions using new communication technologies relies on “kitchen sink” approaches that do not permit an assessment of the individual and combined contributions of intervention components. Currently available reports in the literature focus disproportionately on nonbehavioral outcomes, such as knowledge. In addition, most studies follow participants for only short periods. Multifactorial designs should be used more, with measures of both mediators of behavior and behavioral and health outcomes. Research designs should incorporate the means to study the Internet as a communication process rather than merely a high-tech conveyer of information (Cline and Haynes, 2001). Of the computer-based studies, Winzelberg et al. (1998, 2000) were the only ones to assess mediators of outcomes. More attention also should be paid to the relationship between behavioral determinants and individual characteristics that are identified as important for tailored and Internet-based interventions. As Kukafka and colleagues (2001:1477) noted, Web technology permits us to “deliver a tailored mix of educational content, directed simultaneously at motivations, beliefs, and skills.” However, they stressed the importance of the selection of determinants and constructs: “Sophisticated tailoring to weak or irrelevant determinants and individual characteristics will yield poor results” (Kukafka et al., 2001:1477). A recent review concluded that tailored communication can affect health outcomes more than generic, targeted, or personalized interventions. However, the review also highlighted a number of problems we have noted earlier. These include the lack of explicit theoretic basis, few studies that compare tailored approaches, and an inability to explain what design features affected the outcomes (Revere and Dunbar, 2001). In addition, few studies have assessed the impact of mobile devices for patients, except for data input and monitoring (Revere and Dunbar, 2001). Only 23 studies (62 percent) stated use of a theory to guide the health behavior intervention: 19 were print communication, and 4 were telephone (Revere and Dunbar, 2001). Moreover, more research is needed
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations on wireless devices. Mobile systems have particular appeal because of their portability, privacy, and other features. In addition, they can provide discrete, immediate, and frequent feedback (Revere and Dunbar, 2001; Dirkin, 1994). Of course, cost and availability barriers first must be transcended. In the future, large-scale health campaigns may look vastly different from those with which we are familiar. The mass media may be used to direct people to Internet sites from which they can receive tailored health communication programs, combining the reach of the mass media with the effectiveness of individualized counseling. Such approaches would use segmentation to capture the attention of diverse populations and tailoring techniques to reach individuals. By providing access points in communities, the digital divide could be transformed into digital access. Many new technology commentators have predicted devices that combine several elements and perform multiple functions. An even more important type of convergence may be the convergence of different media, such as mass and micro media, to achieve health communication goals. As new communication technologies proliferate, there is a great risk that an additional divide will develop between the public health sector and other health settings. Urgent attention must be paid to how to increase the availability and use of new communication technologies within the public health sector, where they can meet specific needs of diverse populations. The private and public sectors both have roles in meeting the health information needs of diverse populations and in facilitating the dissemination of new technologies. Although the new media world has many real and potential benefits, potential dangers also exist. The availability of large amounts of data on individual users of the Internet presents a major threat to individuals’ privacy. It is not yet clear how new U.S. Department of Health and Human Services (HHS) regulations governing access to medical data will affect health communication applications on the Internet. Multiple surveys indicate the public is very concerned about privacy online, and health communication
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations researchers and practitioners should pay attention to this issue. The Internet is a bit like the Wild West: It has vast amounts of unregulated territory and no one in charge. Many people believe the Internet is inherently self-regulating, but more regulation may be needed where health information is concerned. Issues of privacy, quality, access, and appropriateness of content for diverse populations must be addressed if the potential of the new technologies to benefit all people is to be achieved. Finally, we want to emphasize our strong belief that although the Internet should be part of the menu of choices available to people who want health information, consumers should not be forced to use new technologies and they should not be denied information because they are nonusers. It would be unfortunate if the Internet became the voice mail of the future. Such a scenario would represent yet another way to meet demand without meeting need in an effort to cut costs. COMMUNICATION: THE NEXT FRONTIER The astronomical increase in wireless technologies providing Internet access through handheld devices brings new meaning to the term personal computer. Many new delivery devices are now available, including kiosks, interactive pagers such as the Black-berry, Web TV, and Internet appliances such as I-Opener and Audrey (designed for placement in the kitchen). Some of these, such as Audrey, already are being displaced by the next generation of technology. Internet-ready cellular phones have made instant messaging a worldwide phenomenon. The handheld devices offer new opportunities to put health messages literally in the palm of one’s hand. New devices are proliferating, and more people are using them. Greater bandwidth and videoconferencing may provide new ways for patients and their health providers to interact (Jadad, 1999). These devices often start as gadgets for the affluent, but then become tools for the masses. In a shorter and shorter amount of time, price goes down and access increases, making the devices
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations more accessible and appealing to diverse populations. Promising examples include devices such as Web Pads, which are now being used in some hospitals to provide Internet access to patients and their families (Bennett, 2001). It may be years before these devices become household products, but now is the time to prepare for the future. In the not-too-distant future, use of Internet radio will be even more important than it is today. Some churches and community groups already have their own radio stations. This trend is likely to increase. Partnerships between health- and faith-based organizations may provide new outlets for health messages. Parallel trends in the syndication of Internet content offer opportunities to customize health content to diverse populations as well as to individuals within those populations. Complementary tools from science and biology will be delivered increasingly via the Internet. An example is the NCI’s Breast Cancer Risk Assessment Tool, which allows women to calculate their probability of developing breast cancer and to receive feedback about potential preventive strategies. The Harvard Cancer Risk Index (http://www.yourcancerrisk.harvard.edu/index.htm) is another Internet-based tool that provides comprehensive cancer prevention assessment and feedback (Colditz et al., 2000). In the future, users of these and other individualized risk assessments will be able to receive private, individualized health advice; make plans; and track their progress. Such tools are likely to be accompanied by biological sensors carried by individuals to monitor bodily processes and provide feedback. In the future, patients may be able to access their own medical records online and to monitor their own test results. This kind of activity now occurs only in limited settings. Instant translation services on the Internet are breaking down language barriers between people. Text-to-speech capabilities are improving and will offer further options to maximize access for diverse populations. The Simputer can read Web pages aloud in Native American languages and is one of a new generation of handheld devices that could make a tremendous difference in ac-
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations cess to information by poor, illiterate people (Ward, 2001). Today’s children and adolescents are growing up with fast-paced, high-tech computer games and television shows and movies that look like the games and vice versa. They will have a facility with computers that few of today’s health professionals have developed. Moreover, their expectation for high production quality will raise the standards for health information. To compete, health communication professionals will have to partner with experts in areas such as marketing, computer design, and computer games. To imagine health communications of the future, one can rely on both a theoretical basis and growing evidence. Undoubtedly, there will be more tailored health communication of every type, using a variety of media and formats. This communication will be increasingly interactive and based on theory-relevant variables as well as other variables, such as cultural factors appropriate to specific behavior. Ideally, this new health communication will complement other communication strategies, such as mass media, social network interventions, policies, and provider counseling. The convergence of mass media and new techniques could permit social-level attention to health issues, with the potential to individualize programs through tailored interventions. The combination of mass and micro media could produce synergistic effects leading to greater behavioral impact. However, we must express appropriate caution. Funding of most health communication research relies on processes that are too slow to accommodate the speed of technology development. Some attempts have been made to correct this problem in other fields, and new approaches should be developed for health communication as well. In addition, public health efforts must compete with much more remunerative private health efforts. Programming and design talent are critical to creating programs that will compete in a sophisticated and information-rich environment, yet such personnel often demand salaries that exceed existing university structures. These concerns could be assuaged by greater collaboration with the private sector and by some creative restructuring of funding mechanisms that support such research.
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations The evolving information technologies increasingly will serve as a vehicle for building social networks. Online transactions transcend the barriers of time and space (Hiltz and Turoff, 1978; Wellman, 1997). Interactive electronic networking can link people in widely dispersed locales, and permit them to exchange information, share new ideas, and transact business. Virtual networking provides a flexible means for creating diffusion structures to serve given purposes, expanding their membership, extending them geographically, and disbanding them when they have outlived their usefulness. Tailored technologies present challenges for delivery and evaluation—especially in public health settings that tend to be computer poor. Demand for health communication interventions using new technologies is likely to outstrip availability. Measurement challenges also exist—such as how to analyze data from trials in which every individual receives a different intervention. Today’s tools will require substantial transformation to be adapted to the methods, messages, and media of tomorrow. The rapidly changing world of the Internet also is changing the look and feel of other media. Magazines and television commercials look more and more like Web sites. In the near future, we may no longer think of mass media, new media, and old media, but many media with different and complementary uses, ultimately able to reach through and touch individuals while creating and enhancing real and virtual communities. The result may be enhanced personal and collective efficacy and, ultimately, improved health. The borders between individuals and countries already have been reduced as health information travels throughout the world in mere seconds. The media boundaries may become indistinct as well. The messages will be far more than the media. But, in a new way, the media will be the message. Another area offering significant, although yet unrealized, potential is disease management through remote monitoring and feedback (Patel, 2001). This may be especially true for asthma and other diseases for which meaningful information exchange and proactive partnerships are essential. Clearly, there are many pri-
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations vacy issues that must be confronted, among other challenges. Nevertheless, some early data suggest that diverse populations can participate in their own self-management through Internet-based assessment and capture of spirometric data (Patel, 2001). Although the committee is optimistic about the future opportunities afforded by new technologies, we recognize that storm clouds are on the horizon. The potential of new technologies still is far greater than today’s reality. As noted earlier in this chapter, the clouds include availability, accessibility, and affordability of the new technologies. Content relevant to and appropriate for diverse populations is a high-priority need. Technology is a means to an end, not an end in itself. We should not place excessive hope in the technology itself (Bandura, 2002b:4). The growing social and economic divide between rich and poor nations presents more daunting challenges to make globalization more inclusive and equitable (Bandura, 2002b:6). Electronic technologies not only may be unaffordable in many parts of the United States and in poor nations, but such places also may lack the educational, communication, organizational, and service infrastructure to manage the use of new technologies. On an individual level, the clouds involve not only threats to privacy, but the ways, still not well understood, in which the medium of new technologies may encourage or at least provide permission for socially unacceptable behaviors. Bandura (2002b) cautioned that concealment and depersonalization can bring out the worst in people. Another problem, whose scope is still unknown, is the amount of incomplete or inaccurate information that is acquired on the Internet. Bichakjian et al. (2002) assessed the accuracy and completeness of information about melanoma on the Internet. Identified Web sites were evaluated by independent reviewers with high reliability. The authors concluded that the majority of Web sites that mentioned melanoma failed to provide complete information on risk factors, diagnosis, treatment, prevention, and prognosis. Fourteen percent of the Web sites included factual inaccuracies. None of the sites used innovative graphic techniques, including
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations videos, to enhance understanding. What the authors failed to point out was that many of the Web pages in their sample were the personal anecdotes of melanoma survivors, and did not purport to be either comprehensive or medically rigorous. As a recent British Medical Journal editorial cautioned, there probably cannot be a single standard of quality on the Internet, just as there could not be for other media (Purcell, 2002). We should be cautious about adding new regulations. Moreover, the Internet has an unexpected dark side. Although it is still a small proportion of overall sales, there is evidence that adolescent minors buy cigarettes on the Internet (Unger, Rohrbach, and Ribisl, 2001). In 2001, Ribisl, Kim, and Williams estimated that more than 88 vendors sold cigarettes online, and the number is growing. Connolly (2001:299) cautioned, “if the tobacco industry embraces this new unregulated medium, many of the major public interventions that we have developed to curb real world lung cancer could go up in a puff of cyber smoke. Taxes, ad bans, and youth access laws are easily eroded online.” In spite of the storm clouds and frank concerns about the new communication technologies, these technologies are diffusing widely throughout the world, with rapid and consistent growth among diverse populations. Our recommendations about the new technologies are made in light of both the vast potential and the possible pitfalls. RECOMMENDATIONS Previously, the Science Panel on Interactive Communication and Health made a series of excellent recommendations about priorities for IHCs (Science Panel on Interactive Communication and Health, 1999). Recommendations focused on several broad areas, including the development and application of models for quality and evaluation; improvement of basic knowledge and understanding of the uses and applications of IHCs; enhancement of capacity, particularly in the public health sector; and increased access to new technologies, especially for diverse populations. We support
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations these recommendations. Most important, we support the goal of universal access as articulated by SciPICH (see Eng et al., 1998:1374): Technology, if used appropriately, can help people increase their knowledge of health, enhance their ability to negotiate the health care system, understand and modify their health risk behaviors, and acquire coping skills and social support. Furthermore, by reducing the information divide now, the next century may bring us closer to health equity. The following recommendations are additional high-priority topics that must be addressed if the advances in health communication are to reach their potential for diverse audiences. The priorities are in the areas of research, practice, training, and policy: Support continued experimental research to understand new communication technologies, including how they are used, how they work, and how they may be used effectively with other communication strategies, such as the mass media, natural helpers, and interpersonal counseling, to increase population reach and maximize health outcomes, especially for diverse populations. This includes assessment of psychosocial, cultural, and other potential determinants of health behavior from the perspective of the public, patients, and health providers, and assessment of how their interactions are changed by new technologies. A goal should be to identify the “active ingredients” that provide informative guides for constructing effective health promotion programs (Abrams, 1999). Are some tailoring algorithms more effective than others? How can one enhance dissemination? Research should be sponsored by the National Institutes of Health (NIH), National Science Foundation, and other organizations, including foundations and the corporate sector. NCI is currently the only NIH Institute that has allocated research support to research designed to increase digital access. More Institutes should invest in this area. Moreover,
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations partnerships, such as that developed by the NCI and the Markle Foundation to fund digital divide projects, can be productive. Increase access of diverse populations to health care information through new technologies. The roles of the public and private sectors should be examined and clarified. New public-private partnerships (some might include faith-based organizations) are needed to develop new technologies, increase access, and develop health information content appropriate for diverse populations. It is unlikely that a technological fix will be sufficient. Both access and content are important. Also important is an understanding of the sociostructural conditions that shape the use of new communication technologies. Support interdisciplinary training in the new technologies at multiple levels, including the next generation of health communication researchers and practitioners, as well as those currently in the field. Training also is needed to equip potential users with the skills to maximize the new technologies to meet their own needs. Encourage HHS to form a cross-departmental working group to make recommendations about how to interface with the commercial sector and should specifically address the issue of search engines. Commercial search engines increasingly are giving priority to paying commercial sites and bypassing public sector and nonprofit sites. This trend may pose a special threat for diverse audiences. User-friendly health portals will be especially important for diverse populations. This priority is consistent with the leadership that HHS has taken with SciPICH, its scientific panel on IHC. Encourage open source development of interventions using new health communication technologies, including those developed for research, to ensure that new tools have wide availability (see Schrage, 2000; Raymond, 1999). This will increase the likelihood that diverse populations benefit from advances in health communication and from the large tax-supported research investment. Develop and test new methods for studying and reporting the nature, uses, users, and impact of the new media. Recognizing
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations that the new technologies create new environments, new kinds of use, and new communities, research methods must be adapted. Provide some fast-track funding to enable researchers to use new technology as developed and to obtain answers quickly. Create a high-level public-private partnership to focus on the multiple issues related to quality and ethics on the Internet, including the consideration of a rating system to brand Web sites that are rated as trustworthy and accurate. However, any quality system must go beyond Web site ratings and deal with content as well. Internet users should be trained to assess the accuracy of health information on the Internet. Important ethical issues are involved in health communication using the new technologies, particularly because of the potential for collecting, storing, and using personal data on Internet users (see Spielberg, 1998; Institute of Medicine, 1999b; Eysenbach, 2000; Eysenbach et al., 2000). Although the issues transcend particular populations, special attention should be paid to the concerns by and for diverse populations. We commend the Internet Healthcare Coalition for its e-Health Ethics Initiative (2000) and encourage wide participation in this effort.
Representative terms from entire chapter: