Expanding the Reach and Impact of
Consumer e-Health Tools

This report stresses that e-health tools have the potential to be part of the solution to health disparities and other policy challenges if appropriate e-health resources become available and useful to a larger proportion of the U.S. population than is now the case. Even though “technological innovation is a major driver of the global economy, quality of life, and [individual] health improvement,” market forces so far have failed to harness these resources to improve population health (Eng, 2004).

Some observers caution that health disparities could worsen as a result of the uneven distribution of e-health tools or consumers’ varying ability to use these resources. Unequal distribution and use of e-health tools could enable some Americans to improve their health and health care while others are left behind (IOM, 2002). Many e-health experts expect that health plans and providers will be the most influential drivers of the adoption of e-health technologies (eHealth Institute, 2005); if so, the large segment of the population without insurance or with no regular source of care will be further excluded from the modern healthcare system.

Public policy and market practices could undermine the benefits for population health in a number of ways. In the private sector, unconstrained commercial uses of health information technology, and in particular unauthorized commercial uses of personal health information, could engender mistrust among healthcare providers and patients. In addition, consumers’ use of tools without an evidence base at best could be ineffective and at worst could waste scarce resources or cause harm. As for public policy implications, the severe economic pressures on policymakers discussed in Chapter 1 could generate aggressive, cost-driven policies that force consumers into technology uses and unsupported health decisions that are beyond their current capacities. For all the dynamism in the e-health marketplace and the congruity of public and private interests, it will take a commitment to the vision of this report and new levels of strategic partnership and leadership to produce population-wide health benefits from today’s promising conditions. Some specific areas in which strategic efforts are needed are outlined in the following sections.

Even when partnerships offer the opportunity to fulfill value propositions for every participant, they are not likely to occur without leadership. This is especially the case when the ultimate value being sought is the public interest; in that case, the leadership almost certainly must come from the Government (Lansky, Kanaan, and Lemieux, 2005). The Office of the National Coordinator for Health Information Technology, U.S. Department of Health and Human Services (HHS), in collaboration with other HHS agencies and departments in the Federal Government, is tasked with providing leadership in health information technology. Consumer empowerment is already part of the health information technology agenda and could accommodate the vision outlined in this report. Leadership can take many forms, including supporting research and demonstrations, convening stakeholders, participating in coalitions convened by others, setting examples through its own activities, and facilitating strategy development. Public policy should focus on developing and implementing strategies to reach those constituencies already on the margins of the digital mainstream, such as persons who are uninsured, have low income, or have disabilities, as well as on identifying incentives in publicly funded programs.

Exercising leadership in this way would augment and be synergistic with several leading Government programs. For example, in addition to the VA’s new e-health tool, My HealtheVet, the U.S. Department of Defense has an electronic personal health management system for its constituents, Tri-Care Online. Several HHS agencies, including the National Institutes of Health, the National Library of Medicine, the Centers for Disease Control and Prevention, and the Office of Disease Prevention and Health Promotion, host multitopic, broad-based, consumer-oriented Web sites and provide digital informational materials for the public. The National Cancer Institute has a number of consumer-oriented e-health programs, some described in Chapter 5. Finally, as discussed above, CMS is beginning to offer digital technologies to help Medicare beneficiaries manage their benefits and self-care.

These activities are a good start, but most of these programs target specific constituencies (e.g., Medicare beneficiaries), functions (e.g., health information), or diseases (e.g., cancer). Given the value propositions outlined earlier, there are sound reasons to support connecting diverse governmental activities as part of a comprehensive, coordinated strategy akin to the current electronic health record initiative.

The current work on personal health records (PHRs) by industry and Government, separately and jointly, is likely to have an important impact on the future of consumer-oriented e-health. In addition, this activity provides a model for what can happen through targeted joint efforts. Connecting for Health, a collaborative of more than 100 public and private stakeholders from Government, the information technology industry, and health care, is working to “bring health care into the information age” through technologies such as electronic health records and PHRs (Connecting for Health, 2004).

PHRs are an emerging technology to enable people to manage their health information and healthcare transactions electronically. Although significant challenges need to be resolved with PHRs, some observers envision them as the gateway and possible platform for all consumers’ personal health management activities (NCVHS, 2005a).

As noted above, the President increased the visibility and momentum for electronic health records when he set a national goal that most Americans should have electronic health records by 2014. The Office of the National Coordinator of Health Information Technology (HIT) bears major responsibility for advancing the President’s goal, and PHRs are one of the goals in the Strategic HIT Framework promulgated in 2004. Former National Coordinator Dr. David Brailer describes the purpose of the office as helping to create the conditions in which the market can deliver health solutions to the nation (Lansky et al., 2005). These activities model the kind of strategic partnerships that will likely be necessary to address the challenges outlined below.

Challenge 1: Linking Development, Evaluation, and Dissemination¹

The preceding chapters discuss this study’s findings about the significant gaps in e-health tool development, evaluation, and dissemination. Chapter 2 outlines the challenges in developing tools for diverse populations. Chapter 3 describes the emerging evidence of the benefits of e-health tools and the fact that the research does not translate into broad use of evidence-based tools outside the laboratory. As Chapter 1 discusses, this study found that the tools in widest use have not been evaluated by unaffiliated third parties, while those that have been the subject of rigorous research often are not widely available. In other words, alignment is lacking between the e-health tools with the best evidence and the ones that most consumers encounter. For example, although the popularity of commercial dieting Web sites may be a sign of the dynamism of the e-health market, questions remain about the scientific basis of the content as well as the short- and long-term behavioral and health effects of the tools.

Researchers and funders report that it is difficult to get evidence-based e-health tools into broad and sustained public use. A major reason for this problem, according to study informants, is the lack of coordinated and balanced funding for development, evaluation, and dissemination, with the bulk of funding supporting only the first two steps. Tools that are developed with Federal and foundation support are generally tested with small, targeted populations.

Funding is not available for sustained dissemination, much less for reaching a significant proportion of the population or for long-term evaluation. Connie Dresser, who coordinates the National Cancer Institute’s Small Business Innovation Research program (described in Chapter 5), points out that this leaves unanswered the question of “real-world” effectiveness (C. Dresser, personal communication, September 10, 2003). In addition, an opportunity is missed to obtain empirical information on the factors that support or undermine sustained consumer use. The failure to get tools into circulation particularly affects population groups with the most to gain from a greater investment in dissemination, which is an important policy consideration given that many of the tools designed for underserved communities are created with foundation or governmental support.

Developers and researchers are a good source of ideas about possible solutions. Study informants point to the need for restructured funding and broader notions of research “success”—in both instances, to include dissemination. They note that as noncommercial developers, most researchers lack the capital and skills to get their tools out to the public. Their isolation from the world of implementers is a major barrier to more effective dissemination of evidence-based tools. Creating a collaboration between these groups, informants say, would require cultural and structural changes within the research field, such as translating technical and scientific jargon into marketing language and reframing rewards so that all stakeholders get a return on their investment.

In addition, developers express interest in learning from the successes of commercial products and applying that learning to getting beneficial tools into broader use. Some cite the pharmaceutical industry, with its sophisticated mechanisms for moving products from inception to market, as a model for a similar “chute” for communication and e-health tools. Fundamentally, the researchers consulted for this project assert that Government and foundation funders should accept more responsibility for the diffusion of products that are developed with their support, provided they are shown to be efficacious. This way, high-quality tools might actually reach the users for whom they were designed.

Challenge 2: Building Economic Viability and Sustainability

Better links among tool development, evaluation, and dissemination could help balance the related goals of expanding markets and raising the standards for e-health tools. This linkage could go a long way toward addressing the sustainability issues that are a common concern of many e-health developers. Sustainable business models are an essential building block in the broad vision for consumer e-health. Government may have to spearhead strategies to reach underserved populations that could benefit from e-health tools but may not initially or ever be able to pay for them. Nevertheless, Government alone cannot underwrite tool development and dissemination on a large scale, so there can be no widespread dissemination and adoption of evidence-based tools without successful commercialization. This was a recurrent theme in conversations during this study, as it is among developers themselves.

e-Health developers are based in public health and public interest organizations, health care, academia, and business as well as in the communication arms of several Government agencies. Their funding sources include grants, investments, and large organizational budgets. As noted, Government and foundation research grants are a major source of financing for tool development and evaluation. After the research and development stage, private-sector developers need realistic business plans to continue production, upgrading, and dissemination. The business models for consumer e-health tools include advertising, sponsorship, licensing, fee-for-service, subscription, and the services of “bricks and mortar” healthcare delivery systems (Eng, 2001, pp. 34-37).

A cross-section of e-health leaders from public health, computer science and technology, health care, academia, and business has been addressing common interests and concerns in eHealth Developers’ Summits since 1999 (eHealth Institute, 2002, 2003, 2004, 2005). The summaries of these meetings provide a window on developers’ perspectives; issues they, their business partners, and their clients face; and other themes in the e-health environment. In general, a growth in optimism about the viability of e-health can be traced from the time of the 2000 dot-com crash through the ensuing Summit summaries. Nevertheless, the search for sustainability business plans for e-health developers stands out as a persistent concern. As the summary of the 2001 meeting stated, “Strong proof of ROI [return on investment] remains elusive for most eHealth solutions, and realizing tangible financial benefits from eHealth is probably a long-term process” (eHealth Institute, 2002, Executive Summary; see also eHealth Institute, 2005, pp. 30-36).

A fundamental part of the problem is that although consumers are the intended end users of these products, few are in a position to pay for them for a wide variety of reasons. For both large and small developers, there is thus a mismatch between users and purchasers. Even consumers who recognize the health benefits of e-health tools and want to use them generally expect another entity to pay for them (Connecting for Health, 2004). Simply put, the market has not yet identified a uniformly successful price or sales model for consumer information Web sites and other e-health tools.

The information derived from interviews for this study on 40 e-health tools, although not necessarily representative, illustrates the sometimes roundabout route to consumers and the disconnect between payers and end users (see Appendix 1). The interviewees report that consumers—who are by definition the end users of all the e-health tools—pay to use only 9 of the 40, and only 3 tools are exclusively distributed directly to consumers. In some cases, developers produce commercial direct-to-consumer versions as well as others that are made available through business partners. Tools in the latter group usually have more functions, customized to the business partner’s specifications. Partners in the categories listed in Table 4 disseminate 37 of the 40 tools in this group. Thus, consumers gain access to them in their capacity as employees, health plan members, national health organization constituents, and so on. Relatively few developers have the funding to conduct rigorous scientific evaluation of their tools; most conduct cost-benefit studies comparing health service utilization, absenteeism, or other variables related to the cost of distributing the tool, to demonstrate their products’ ROI for purchasers.

On the subject of the research-dissemination disconnect, eHealth Summit discussions identify integrating research findings into viable real-world products as a particular challenge for developers. The 2004 Summit group voted “lack of expertise to translate research findings into practical product modifications” as the chief reason why there is not more e-health research. This followed the 2003 meeting’s call for alliances and partnerships between academic researchers and commercial companies with common target audiences, to speed dissemination and diffusion of findings into marketable products.

A public interest perspective requires that profitability be combined with quality, utility, privacy, continuity, and other values for consumers. Finding commercial models that allow developers and suppliers to satisfy business requirements while also serving the public interest is an important challenge facing policymakers and others who hope to stabilize the market and expand the public benefits of e-health tools. Arguably, the dual goals of market stability and wider reach for e-health tools are synergistic. Opening new markets could increase the financial viability of e-health developers. Seventy percent of the 2003 eHealth Summit participants favored this idea, indicating in a survey that they saw market potential in underserved communities (eHealth Institute, 2004).

Healthcare reimbursement and payment policy is another important part of the solution. The former National HIT Coordinator Dr. David Brailer captured a key attribute of e-health: “Today’s reimbursement policies are based on the premise that legitimate care is only done in proximity to a doctor, and that needs to change. Care does not have to be the same place and time as the doctor; it includes daily monitoring, e-mail, and more. Modern policies need to incorporate the consumer in self-management” (cited in Lansky et al., 2005).

Challenge 3: Protecting Privacy and Nurturing Public Trust

Protecting the privacy of personal health information in e-health tools is another “public good” requiring attention from policymakers and private-sector partners. This issue is highlighted here for two reasons: first, the well-documented privacy concerns of consumers, healthcare providers, and others could impede the adoption and use of e-health tools and limit their benefits (California HealthCare Foundation, 2005); and second, the well-being of users is at risk if privacy protections are inadequate.

Surveys show that consumers rate personal health information as one of the two most sensitive types of consumer personal information (along with financial information), and they are concerned about the electronic collection and use of their medical records. Individuals with serious and/or genetically based health conditions express the greatest concern (NCVHS, 2005b). Many consumers fear identity theft as well as discrimination against them in employment, insurance, or other areas based on their health status. Some people fear that their privacy is at risk when they are surfing the Web, and many who use health information Web sites do not share their personal data (Westin, 2005).

People’s fears about abuses, especially related to electronic medical records, are not unfounded, as confirmed in the daily newspaper. Policymakers, healthcare organizations, developers, and public-private collaborations take these issues seriously and are working on laws, regulations, and security mechanisms to prevent or at least minimize privacy abuses. Consumers’ attitudes toward privacy and electronic personal health information vary widely. Although some people express fear about any electronic processing of health records, others celebrate the benefits of this technology and freely share private information in public online communities. The developer interviews for this project provide anecdotal information about some consumers’ practices in this area as well as developers’ approaches to protecting privacy. Information from the interviews together with observation of Web sites reinforce the point that consumers exhibit widely ranging attitudes toward health privacy (see Appendix 1).

This area warrants further research into consumer attitudes and practices as work continues to improve laws, regulations, and security mechanisms. The heart of the question before policymakers is how to nurture an atmosphere of justified public trust. Doing so requires establishing adequate security mechanisms and respecting consumers’ choices about sharing information in different circumstances. It also involves cultivating in consumers an appreciation for the potential benefits of health information technology—for themselves and their families. As awareness grows about the seriousness of these issues, a number of public and private groups are working on health information privacy and security. They include the National Committee on Vital and Health Statistics Subcommittee on Privacy and Confidentiality, which advises HHS, the HHS Privacy Advocate, the HHS Office of Civil Rights (which enforces the Health Insurance Portability and Accountability Act [HIPAA]), and several university-affiliated institutes.

Challenge 4. Assuring Quality

The quality of information and tools available on the Internet is an ongoing and unresolved issue in the e-health field. Apart from privacy and confidentiality issues, public trust can be undermined by doubts about the reliability of the information and claims from either commercial or governmental sources. Although health Web sites can be reviewed and accredited by established organizations, such as URAC (American Accreditation HealthCare Commission, Inc.), accreditation remains an underused practice in this sector. The cost of accreditation and an apparent lack of consumer demand for it have resulted in a limited number of sites seeking accreditation (see the list of accredited Web sites at www.urac.org).

The research review in Chapter 3 as well as the interview reports in Appendix 1 indicate that researchers are trying to determine consumer behavior toward quality assessment and identify mechanisms to enhance and signal quality to consumers. Quality assessments of e-health tools, however, are an elusive target and depend in large part on editorial processes, judgments about what constitutes reliable and credible sources of information, and an ever-changing body of scientific knowledge about health conditions and their causes, effects, and treatments. Beyond the Healthy People 2010 objective on the proportion of health Web sites that disclose information to assess the quality of the site and past interest from the Federal Trade Commission in fraudulent health claims and privacy policies, there has been little public policy attention to matters of information quality on the Internet.

If e-health tools evolve primarily as a part of health plan and provider operations, then quality assurance of the tools may become a routine part of business. Consumer behavior suggests, however, that finding and comparing Internet health resources is a popular activity and one unlikely to be eliminated by the greater availability of provider portals. Consumers may not be clamoring for public action on quality assurance, but quality may nevertheless become a public policy matter if consumers end up choosing questionable tools that result in higher costs and worse health outcomes.

Summary

This chapter portrays a dynamic e-health arena and identifies the gaps that must be filled to transform it into one from which more Americans can benefit. The goal, as outlined in Chapter 1, is to get appropriate evidence-based tools into wide and sustained use to improve population health. The steps that must be taken to achieve this goal, as outlined in this chapter, include linking e-health tool development, evaluation, and dissemination; building viability and sustainability; protecting privacy; and assuring quality.

This chapter profiles the many interests at play in this environment. The stakeholders who share an interest in consumer e-health include consumers themselves, developers, and researchers as well as healthcare organizations, purchasers, employers, public health programs, and governmental institutions. All are potential participants, in various combinations, in efforts to create the conditions in which many more Americans can enjoy the benefits of appropriate e-health tools. Moving beyond the status quo requires collaboration among stakeholders who see and take action beyond their customary boundaries. This chapter mentions several such collaborations, and Chapter 5 profiles others. A large gap that remains to be filled is leadership and coordination within and between the public and private sectors.

¹This section is based on discussions with developers, researchers, and public health professionals in interviews, a special conference call on dissemination issues, and a November 2004 review meeting. See Appendix 2 for a list of participants.

Chapter 5 >

Expanding the Reach and Impact of Consumer e-Health Tools

June 2006

Chapter 4. Strategic Factors in Realizing the Potential of e-Health (Part 2)