Expanding the Reach and Impact of
Consumer e-Health Tools

June 2006

Chapter 4. Strategic Factors in Realizing the Potential of e-Health (Part 1)

Introduction

This chapter looks at the forces that are connecting consumers and e-health tools and creating a dynamic e-health marketplace. It depicts an e-health arena that is evolving in response to cultural and technological trends, market and health system forces, and policy initiatives. It also identifies the limits of the current e-health market to coordinate e-health tool development, evaluation, and dissemination; generate sustainable business models for e-health tools; and provide strong privacy protections and quality assurance to nurture public trust. These activities are generally beyond the market’s capacity to address on its own because they require changes and investments for which there is no immediate or direct return on investment for individual stakeholders. Given the public interest in and policy commitment to universal access to broadband technologies and electronic health records noted in Chapter 1, the public sector has the ultimate responsibility for ensuring these limitations are addressed.

Government coordination of efforts to realize the public health potential of e-health tools could be synergistic with existing public-sector programs and could help advance a number of important policy goals, including eliminating health disparities and supporting consumers in taking more responsibility for their health. Government cannot achieve these changes alone, however; it needs to join forces with the many stakeholders profiled in this chapter to design and carry out strategies from which every participant can derive appropriate benefits.

Signs of Dynamism

Consumer e-health is part of the broad cultural shift toward Internet and technology use, such as portable music devices, cell phones, instant messaging, and interactive voice-response systems, as a normal part of everyday life. At the end of 2004, approximately 70 million Americans used the Internet on a typical day for activities as varied as banking, shopping, real estate transactions, research, entertainment, self-expression, and voting; the Internet is “the new normal” (Rainie and Horrigan, 2005).

The same information and communication technologies that enable these other activities offer opportunities in the health arena as well. For example, hardware is becoming smaller, more powerful, cheaper, and more portable. Software is evolving to permit the storage and integration of ever-greater volumes of information. Search engines are proliferating and becoming more robust. Communication technology is enabling greater speed, the use of multimedia, and increasing mobility. All these factors can be conducive to wider dissemination of e-health tools, provided ubiquitous broadband access can be achieved.

There are many signs of the dynamism of the e-health environment, as demonstrated in the following examples.

• Manhattan Research reported in 2002 that the number of e-health consumers was growing at twice the rate of the overall online population (eHealth Institute, 2002, p. 16).

• The National Library of Medicine reported that the number of unique MedlinePlus users grew more than threefold, from 16 million to 52 million, between 2003 and 2004 (B. Humphreys, personal communication, December 6, 2004; www.nlm.nih.gov/medlineplus/usestatistics.html).

• In the last week of March 2005, the Association of Cancer Online Resources (ACOR.org) delivered 1,524,367 individual e-mails around the globe (G. Frydman, personal communication, April 2, 2005).

• Recent surveys indicate that 80 percent of adult Internet users, or nearly half of Americans over age 18 (about 95 million), say they have researched at least one health topic at some point (Fox, 2005b).

• Two consumer-oriented applications—disease management and patient-centric portals—were included among nine “major HIT trends” (Healthcare Informatics, 2005).

• The major media regularly report e-health topics. For example, patient blogs and their proliferation are a subject capturing media attention; the Wall Street Journal called patient blogs “a new and more personal alternative to the plethora of disease-related Web chat rooms, message boards, and e-mail discussion groups” (reported in iHealthBeat.org, May 4, 2005).

• President Bush has made it a national policy goal that all Americans will have portable electronic health records, which they control, by the year 2014, and he created an office to coordinate progress on health information technology (Bush, 2004a).

• A RAND Corporation study found that 72 percent of adults sought out information for treatment decisions, and 69 percent of adults used the Internet more often than any other source for health information (RAND Corporation, 2005).

The growing diversity of the e-health market is itself an important sign of its dynamism. The momentum toward e-health now affects nearly every segment of society, albeit to a different extent. For example, the 5 to 7 million enrollees in the My HealtheVet program of the U.S. Department of Veteran Affairs (VA) can view parts of their health records and carry out health-related functions through personally controlled electronic health records (www.myhealth.va.gov). Significantly, so can the 1,500 migrant farmworkers enrolled in the California program MiVIA (profiled in the Preface). And every month, more than a third of the 300,000 subsidized housing residents in the United States who use the Beehive (www.thebeehive.org), a Web site designed for persons with low literacy, visit its health section—consistently the most trafficked section of the site (S. Brachle, personal communication, March 2005).

Just a few years ago, the “typical e-health consumer” was described as “educated, middle- or upper-income, and an assertive and empowered buyer” (eHealth Institute, 2002, p. 16). Citing 1999 findings of Cyber Dialogue, Inc., Cain, Sarasohn-Kahn, and Wayne reported that “online health consumers behave in ways typical of New Consumers (individuals with a certain amount of discretionary income, experience with computers at work and/or at home, and the equivalent of at least 1 year of college education)” (2000, p. 14).

Although younger, better-off consumers continue to predominate in this market, the e-health consumer profile is slowly growing more multidimensional as new channels to e-health tools open and the number and type of stakeholders, intermediaries, and dissemination agents expand. Persistent disparities and the digital divide still require policy attention, but usage trends in the U.S. population are moving toward greater inclusiveness. Today’s Internet users, for example, include more seniors, especially the cohort aging into that category (Kaiser Family Foundation, 2005); more Hispanics (Hispanic Market Weekly, 2006; Spooner, Rainie, Fox, et al., 2001); more African Americans (Spooner and Rainie, 2000); and more low-income Americans (Cain et al., 2000). In addition, evidence suggests that some traditionally underserved groups, such as seniors, Hispanics, and African Americans, are even more likely than others to seek health information online (Gustafson, Hawkins, Pingree, et al., 2001; Zarcodoolas, Blanco, Boyer, et al., 2002).

Research also suggests that health status is a complex aspect of consumer interest in e-health. One survey classified online e-health users based on health status and found that “the well” comprised 60 percent of all e-health users, “the newly diagnosed” were only 5 percent, and “the chronically ill and their caregivers” were 35 percent (Cain et al., 2000). The researchers report that the “well . . . search for preventive medicine and wellness information in the same way they look for news, stock quotes, and products,” whereas the “newly diagnosed . . . search frenetically and cover a lot of ground in the first few weeks following their diagnosis,” but do not necessarily become consistent users. The authors call particular attention to the third group—the chronically ill and their caregivers, who “have the greatest potential to affect and be affected by Internet healthcare provision” because they have incorporated chronic illness management into their daily lives and “turn to the Internet for help” (quotations are from p. 1).

Using data from the Pew Internet & American Life Project, Houston and Allison analyzed health status for Internet users who go online for health information (2002). They found that those who rated their health either as fair or poor were newer users of the Internet but tended to use the Internet more frequently and were more likely to use information from online chats.

Consumers also vary in the stimuli causing them to seek out e-health resources. Some do so after learning about them from healthcare practitioners, media advertisements, or friends. Many health educators and healthcare practitioners, rather than producing their own educational materials, refer patients to Web-based resources or download and provide the information.

The concept of “information therapy,” the prescribing of targeted information as part of a clinical encounter, has taken hold in healthcare organizations, such as Kaiser Permanente, and information providers, such as the National Library of Medicine. (See Center for Information Therapy [www.informationtherapy.org] for one perspective on the information therapy concept.) A significant percentage of e-health end users do not use the technology themselves, but rather come to the resources indirectly through relatives, friends, or other intermediaries (“infomediaries”) who serve as caregivers or information sources. Manhattan Research estimated in 2003 that the “zone of influence” surrounding what was then 82 million e-health users extended to 135 million Americans (as reported in the eHealth Institute Summary Report, 2004, p. 13).

Another stream of e-health consumers comes to these tools initially not through personal initiative but in response to organizational programs. This source of momentum is significant in understanding the forces at work in the e-health market. The organizations in question engage their constituents in using e-health tools (developed, purchased, or leased by the organizations) as part of strategies to enhance services, reduce costs, or achieve other program objectives. The dissemination and marketing strategies used by such organizations may provide useful models for future efforts to widen access to and use of e-health tools.

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Diverse Interests and Stakeholders

The following sketches illustrate the variety of settings in which consumers encounter and use e-health tools, the factors influencing their e-health practices, and the range of e-health functions available. These characters are fictitious and in many ways idealized because many tools in the market do not have the multifunctionality, interoperability, reliability, and quality of the tools described below. The sketches are useful, however, to illustrate key points about e-health activities and the many purposes they could serve for funders, suppliers, intermediaries, and end users. The hypothetical value propositions involved are summarized in Table 4.

• Ella is the mother of Nathan, who has autism spectrum disorder. Ella uses a variety of e-health tools to get information about autism; keep a log of Nathan’s treatments, behavior, diet, and other factors; and communicate with other parents of autistic children. She is also able to exchange periodic e-mails with the family pediatrician through her health plan’s Web site.

• Carlos has just been diagnosed with prostate cancer. His doctor mentions several treatment options and, because it is a lot of information to process in one visit, suggests that Carlos use an e-health tool to systematically consider and decide among his treatment options. The doctor also recommends a Web site that links Carlos to a national network of other men dealing with newly diagnosed prostate cancer.

• Ed has diabetes and lives in subsidized housing that was wired for Internet access when it was built. A neighbor who also has diabetes told Ed about the Beehive, a Web site designed for users in affordable housing. Through the Beehive, with his doctor’s encouragement, Ed found more information about managing his disease and was able to connect to the American Diabetes Association site easily, where he found an e-health tool he uses to monitor his blood sugar at home. He reports regularly to his doctor, who monitors blood sugar levels and will contact him if a medical intervention is needed. Ed also keeps up with the latest medical research and tips on self-care through listserv bulletins from the Association.

• Marian is enrolled in a large health plan. Through its patient portal, which she can view either at home or at the outpatient clinic, she can see parts of her electronic medical record, refill prescriptions, make and change appointments, communicate securely with her physician, and link to health information Web sites recommended by her health plan.

• Fran needs to help her mother find a high-quality nursing home and is very concerned about both cost and quality issues. She downloads information from a Government Web site on nursing home costs and quality, and she enters it in a decision-support spreadsheet program that enables her to keep records of her mother’s Medicare payments and medical expenses. Fran also uses a personal health record to keep track of her mother’s medications, healthcare appointments, and daily blood pressure readings.

• Hilary works for a large company that, through its employee wellness program, is offering her financial incentives to lose 30 pounds and get her hypertension under control. The company offers employees free subscriptions to an online health management tool Hilary can use to find scientific information on nutrition and fitness and to keep track of her eating and exercise. Because she finds she needs extra support, especially at night when she tends to snack, Hilary also joins an online community that gives her peer contact around the clock.

• Rosa has decided to heed her children’s urging that she get a mammogram. With their help, she views an online educational video and downloads illustrated Spanish-language information on mammograms and breast cancer from the kiosk at her community health clinic. Because her reading skills are limited, she appreciates the plain language, illustrations, and spoken narrative available on the kiosk. Her children appreciate the printed materials they can take away and refer to, to help Rosa understand and act on the advice.

• Gregory is a sixth-grader who has trouble with impulse control. At school, his teacher builds into his curriculum a regular time to use a computer program to keep a confidential journal and play instructive computer games. The games help Gregory learn methods for controlling his impulses and getting along with his classmates.

• Alan is a college student who’s been told he must cut down on his binge drinking if he wants to stay in school. His university provides an e-health tool he can use to record his goals, keep track of his drinking patterns, and maintain a confidential journal. He can enter his weight, number of drinks, and other variables into a calculator to determine what his blood alcohol content would be and the impairments that might result. For a reality check, he can also use the tool to compare his drinking to that of his peers.

As these sketches illustrate, individuals, groups, and organizations have a broad range of interests related to consumer e-health. Healthcare organizations and health plans are major drivers. A growing number of them, and especially large health plans, offer their enrollees portals that afford access to electronic health records, communication, and administrative functions within the institution as well as ancillary health management functions. For these organizations, patient portals can be both an attractive member benefit and a means of reducing administrative costs.

Some healthcare organizations and purchasers offer their enrollees disease management tools to improve care and possibly reduce costs. Disease management tools are an important facet of the Chronic Care Improvement Program of the Centers for Medicare & Medicaid Services (CMS), which will be responsible for nearly half of all healthcare spending by 2014 (Heffler, Smith, Keehan, et al., 2005). CMS also is pilot-testing the Medicare Beneficiary Portal, an example of the kind of portal being offered to enrollees with information on health benefits, clinical content, and clinical transactions. If the CMS pilot is successful, the number and diversity of Americans with access to such portals will increase significantly.

The above sketches also illustrate that healthcare providers and purchasers are not the only public- and private-sector stakeholders in the e-health arena. For example, some large employers offer employees e-health tools as part of strategies to control healthcare costs and enhance employee health. Local, state, and national public health programs offer online prevention and behavior change programs and resources. Some schools encourage students to use e-health tools to help them deal with behavioral and health problems.

Table 4 summarizes the types of stakeholders in the e-health market and some of the interests motivating them. Nonconsumer stakeholders are particularly important for strategies to extend the reach and impact of e-health tools. Alliances and strategies formed around the vision articulated in the Preface should recognize the value propositions for every participant. It is possible that the relative benefits will vary for different stakeholders under different conditions. For example, the potential public health benefits may justify Government investment in e-health tool research, development, and dissemination for underserved populations even if an uncertain return on investment makes commercial interests reluctant to take the risk.

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Table 4. Potential e-Health Value Propositions for Major Stakeholders