SciPICH: Final Report - Overview of Major Policy Issues

Wired for Health and Well-Being: The Emergence of Interactive Health Communication

Editors: Thomas R. Eng, David H. Gustafson

Suggested Citation: Science Panel on Interactive Communication and Health. Wired for Health and Well-Being: the Emergence of Interactive Health Communication. Washington, DC: US Department of Health and Human Services, US Government Printing Office, April 1999.

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Chapter VI.

Overview of Major Policy Issues

Several areas of national health information policy have undergone scrutiny in the context of the National Information Infrastructure and increasing use of information networks (Shortliffe et al., 1996; NAS, 1997). To date, most health information policy discussions at the national level have centered largely on provider-focused issues related to health data and information standards, data and network security, privacy and confidentiality of electronic data, telemedicine, and appropriate legislative and regulatory actions. Recently, however, the National Committee on Vital and Health Statistics (NCVHS) submitted to the HHS the first national health information policy document to explicitly integrate online and interactive consumer/patient applications (NCVHS, 1998). HHS is now studying approaches to building such a comprehensive, national health information infrastructure, including the respective roles of the public and private sectors.

In this chapter, the Panel outlines major policy issues that are relevant to the development, implementation, and evaluation of IHC applications (Patrick et al., 1999). Readers also should be aware that other policy discussions regarding the regulation of use and access to the Internet as it relates to electronic commerce, illegal activities, and minors’ access to explicit materials, also may impact on IHC use. Information about these issues can be found elsewhere (CICAC, 1998; The Internet Society, 1998) and are beyond the scope of this report.

Privacy and Confidentiality

Privacy and confidentiality of personal health information are major issues for consumers, and these concerns are magnified when information is collected, stored, and made available online (NRC, 1997; CHCF, 1999). As the number and variety of developers and disseminators of IHC applications grow, consumer confidence about developers’ ability or intent to ensure privacy will be challenged. For example, some employers are providing employee access to tailored health promotion applications at the workplace, but the increasing practice of monitoring employees’ Internet use may discourage many people from accessing sensitive applications at their workplace. In addition, current technology allows developers and sponsors of Web sites to have access to the Internet addresses of users who frequent their site, and to place "cookies" on users’ computers to track usage patterns and help the host site deliver personalized content. Developers should recognize that the ability to ensure privacy and confidentiality of responses is related to the accuracy of sensitive health information collected from users, and, thus, the quality of information and guidance provided back to the user.

Current policy discussions have focused much more on privacy and confidentiality protections for information collected during clinical encounters (e.g., electronic medical records, clinician-patient e-mail, and telemedicine encounters) than on information generated by use of IHC applications. These discussions should be expanded to recognize that personal health information is even more likely to be generated, transmitted, and stored within the context of using IHC applications (e.g., completing an online health risk appraisal, obtaining individually tailored health information or guidance; and maintaining a personal online health record). If the administrative simplification provisions of the Health Insurance Portability and Accountability Act of 1996 are ultimately enacted, the volume of electronic personal information exchange would increase significantly. Although such data flows are now only intended for administrative and financial purposes, health plans and providers could decide to build personalized interactive applications that draw upon patient/beneficiary profiles (HHS, 1999).

In the near future, personal health information will be generated during both clinical and nonclinical encounters in disparate settings, such as schools, mobile immunization clinics, public places, and the home. In fact, many health-related encounters may not even involve a health professional or a person, but rather, an intelligent software agent may be the intermediary. In addition, IHC applications may enable the collection, aggregation, and analysis of health information on a community level. Although public health and health services research may require legitimate uses of anonymous personal health information, policies and procedures for ensuring privacy and consent for release of personal health information will need to recognize these emerging points of health information collection and dissemination.

The need for confidentiality of personal health information must be balanced against the need for appropriate access to medical and related information for public health research, and resultant public health programs and policies. Although it is tempting simply to establish and enforce impenetrable "firewalls" between health-related records and public health researchers, policymakers must consider the value to public health of understanding the biological, behavioral, and environmental factors that can influence health and disease in populations. Research on approaches and models that can serve this vital need—while maintaining confidentiality—should be a high priority. This is particularly the case as research into the genetic basis of health and disease (e.g., the Human Genome Project) is augmented by complementary research into the behavioral and environmental modifiers of those determinants.

Several private sector efforts are emerging that promote assurance of data privacy for personal data collected over the Internet. For example, one nonprofit organization has developed a branded, online "seal" that signifies a Web site’s adherence to privacy principles and their agreement to disclose information gathering and dissemination practices (TRUSTe, 1998). This and other initiatives reflect the public’s desire to be clearly informed about exactly how the data they submit will be used.

Oversight and Regulation

There has been relatively limited discussion and no consensus on whether and under what conditions IHC applications should be regulated by government agencies. Some developers fear that government regulation of emerging fields, such as IHC, will stifle innovation and create bureaucratic hurdles that compromise the timeliness and marketability of applications. Others, including some consumer advocates, believe that in a field with many potentially serious consequences, such as IHC, regulation should remain an option in the absence of effective industry self-regulation. Given their mandate and history, at least two Federal government agencies may have potential jurisdiction over IHC applications. The Food and Drug Administration (FDA) regulates pharmaceuticals and medical devices and the Federal Trade Commission (FTC) oversees some aspects of advertising and trade. Several leading health and information technology organizations have outlined a proposed FDA role in the regulation of "clinical software systems," including some IHC applications (Miller and Gardner, 1997). The FTC has monitored health Web sites for false and deceptive claims and practices (FTC, 1997), but there is no systematic review and follow-up. With online health and medical advertising projected to grow from almost nil in 1996 to about $265 million in 2002—half of which is direct-to-consumer advertising by pharmaceutical companies—this issue will be increasingly important (Jupiter Communications, 1998). As with false and deceptive mass media advertising, government agencies and consumer interest groups may choose to exert oversight and monitor this situation. Government regulation of IHC may be more likely if developers do not adopt minimum standards of self-evaluation and quality control.

As IHC applications become more sophisticated, their power to persuade people to make substantive health decisions will rise sharply. Their potential to perpetrate fraud and deception will also increase. Some oversight of IHC content may occur through the extension of existing mechanisms for certification, licensure, and accreditation of health care facilities and systems. Because of the newness of IHC applications, and the difficulty in anticipating the kinds of safety and effectiveness problems that might result from their use, it is likely that legal cases and resulting case law will influence the policy environment for IHC application development and adoption.

Liability

The extent and nature of liability associated with IHC applications are unclear. Providing medical advice through IHC applications, including Web sites, increases potential liability for developers. This may be especially true for more sophisticated applications that provide decision support in high-consequence areas. As IHC applications become more complex and widespread, flaws in design or output may appear and cause unintended harm. In addition, it is unclear to what extent independent developers are legally responsible for multifunctional applications. One example of this may be a health plan that is being sued because of erroneous clinical advice provided by their "ask the doctor" feature which is closely integrated with a health information module that was developed by an external developer group. To what extent the developers, sponsors, content providers, or others involved in the design and implementation of the application will be liable for damages is unknown. In the absence of precedents in this area, future legal action and case law may provide some clarity on these issues.

Accreditation and Certification

Two major models for promoting quality improvement for IHC are accreditation of developers (where a developer’s ability and capacity to develop high-quality and effective applications are evaluated) and certification of applications (where specific applications are evaluated for quality and effectiveness). Examples of this are accreditation and certification of health care providers and consumer products by private organizations such as the National Committee for Quality Assurance (NCQA), the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), Underwriters Laboratory, and the American Academy of Pediatrics. Applying these approaches to IHC developers and applications may be feasible in the future but it does not seem possible to implement them now. There are several major differences between accreditation of IHC developers and health professional schools, hospitals, and health plans. Developers can quickly switch focuses and strategies at the whim of shareholders or the market. There is also concern that such approaches would be discriminatory against smaller developers and hinder creativity because they are less likely than large companies to have the resources to fulfill the requirements of a formal comprehensive accreditation and/or certification process.

Another approach to quality improvement is to implement rating systems or other mechanisms to facilitate evaluation and benchmark IHC applications for consumers. Many examples of such tools are already in use (Jadad and Gagliardi, 1998; Kim et al., 1999). It is unclear, however, if current systems are effective in promoting quality or changing consumer behavior. Further efforts are needed to explore new models that are valid, address the dynamic nature of new technologies, and can be readily understood by the public. Several consumer-oriented organizations, such as Consumers Union, have successfully implemented rating systems for many consumer health products.

Public Investment in Development and Research

Private capital for IHC development comes from investors who purchase equity in the company or corporations that sponsor the activity. Public support includes grants or contracts, and potential specific financial incentives, tax relief, or other forms of indirect support. Many government agencies, particularly those within HHS, are actively involved in developing Web sites that provide health information. It is unclear what proportion of government research and demonstration grants are being used to support IHC development in the private sector. The Small Business Innovation and Research grants given by HHS agencies, and the Telecommunications and Information Infrastructure Assistance Program, the National Institute of Standards and Technology, and the Advance Technology Program of the US Department of Commerce, are common sources of such support (Appendix C).

There may be at least two situations in which public funding of IHC is warranted. One is to support development of applications that address health issues for which there is no or limited commercial interest, such as applications for rare health conditions and underserved populations, and those that enhance the public health. Without public support or incentives, the capital needed to develop them may not be available. Another potential area for public support is in sponsoring demonstrations or case studies of the feasibility, utility, and effectiveness of IHC interventions that contribute to improving health and reducing health care costs.

Payment and Reimbursement

Either government or private payers may set reimbursement policy for IHC-mediated services. Changes in Medicare and Medicaid reimbursement policies often drive reimbursement policy for private insurers. The Health Care Financing Administration (HCFA) has approved reimbursement for real-time clinical consultations in rural areas within specific parameters, but will not cover IHC-related functions (HCFA, 1998). Government program reimbursement for IHC-mediated services seems to be relatively low on the priority list. Private health plans and insurers also may not be proactive in this area but they may be more likely to initiate reimbursement of specific IHC applications if they are proven to be cost-effective. More frequently, health plans are introducing Internet-based consumer services as a customer service, or, less frequently, as part of disease management programs.

Integration of IHC With Clinical Practice, Public Health, and the Workplace

Clinicians, health care organization administrators, and public health officials are grappling with how to integrate IHC into clinical care and public health. What types of IHC applications are appropriate for use in clinical and public health practice? What kinds of technology access should health professionals have? What technology needs and training are necessary to support them? How much should clinicians and public health professionals rely on IHC to fulfill their patient and public health education functions? What kind of support do clinicians and public health professionals need from administrators and support personnel to assure that access to IHC applications improves the efficiency and effectiveness of their interactions with patients and clients? How can systems be designed to alert occupational safety and health professionals about new workplace hazards?

A major obstacle to clinicians promoting the use of IHC and integrating it into their practice is the time constraints on clinical encounters under which many clinicians operate. Some clinicians, for example, believe that patients who frequently use the Internet to research health information are time-intensive to manage, and that they do not have the time to help patients interpret the information they encounter. On the other hand, IHC may help alleviate some time and resource pressures because referring patients to quality IHC applications may augment the limited time clinicians typically devote to patient education. However, in some settings, these efficiencies cannot be realized unless there is substantial administrative support for redesign of processes of care. Certainly reimbursing clinicians for time spent assisting patients with IHC or other models that provide clinicians with time to assist patients would encourage them to take such an active role. There are also health care providers who are reticent to promote the use of IHC because of the potential threat to their authority or change in the traditional patient-provider relationship. Information and communication technologies will clearly change some paradigms in health care delivery (Blumenthal, 1998), but it is unclear to what extent it will impact on the patient-provider relationship. In many cases, the people who ultimately implement and integrate IHC into health care or public health systems are nurses and nonclinical personnel, such as office managers and administrators.

IHC applications overlap with two other information technology applications in health care: clinical information systems and telemedicine. There is considerable private investment in electronic clinical information systems and telemedicine. These systems and projects typically focus on facilitating clinical care delivery in the context of a health care setting and seldom integrate the health information and support functions of IHC applications. There is, however, some movement toward integration of IHC with clinical care delivery as exemplified by initiatives at several managed care organizations (AAHP, 1999). To ensure that electronic medical records, telemedicine applications, and other clinical systems are interoperable, the design of these and public health information systems and applications will need to be based on recognized standards and open platforms. As technology infrastructure and software tools improve, comprehensive interactive applications that encompass clinical, public health, and IHC functions are likely to emerge. The "National Health Information Infrastructure" envisioned by the National Committee on Vital and Health Statistics (NCVHS) would promote this trend (NCVHS, 1998).

Efforts are being made to strengthen access to public health information and communication among public health practitioners. For example, the Information Network for Public Health Officials, initiated by the Centers for Disease Control and Prevention (CDC) in 1992, supports public health professionals in carrying out the core functions of public health (Baker et al., 1995). Additional initiatives to enhance public and health professional access to current public health information may help integrate such information into IHC applications that promote health and use of preventive services.

The extent to which public health departments are reliant on advanced information and communication technology to facilitate health services delivery and public education varies greatly. As with many health issues, smaller health departments will have challenges integrating IHC applications into their operations because of the lack of resources and technical expertise. It is likely that national, state, or regional efforts to develop and disseminate models of integration of IHC into public health practice will be necessary. Continuing reductions in costs of computer hardware and communications services may make these technologies more affordable to local health departments.

Internet-accessible computers are ubiquitous in many work settings, but they are generally used for reasons other than health and safety. Although some occupational health and safety professionals report using the Internet for health information, it is unclear how many of them are aware of the range of IHC resources available, or whether these resources have been, or could be, integrated into occupational health and safety programs. It is also unclear whether existing IHC applications are sufficient to meet the diverse needs of US worksites. Issues of employer-employee trust will need to be addressed for successful implementation of IHC applications in the workplace.

Access to IHC

IHC may help reduce health disparities through their potential for promoting health, preventing disease, and supporting clinical care for all. Recent data indicates that the profile of Internet users may be becoming more representative of the general population (PRCP&P, 1999), but the poor and others who have preventable health problems and lack health insurance coverage are unlikely to have access to such technologies (Eng et al., 1998; US Department of Commerce, 1998). Data shows that lower income families, rural households, African Americans, and Hispanics are less likely to own a computer or have Internet access than other groups (US Department of Commerce, 1998). For example, in 1997, only 2 percent of rural US households with incomes between $5,000 and $10,000 had access to online services compared to 50 percent of families with incomes greater than $75,000 in 1997.

Enhancing access to health information and support may promote more efficient use of services (Pane et al., 1991; Stern et al., 1991), reduce the total costs of illness (Gustafson, Peterson-Helstad et al., 1995), and help avert preventable health conditions that disproportionately impact lower income populations (Shimakawa et al., 1994; Liu et al., 1996). Although data on the impact of IHC on underserved populations are limited, some studies suggest that it can improve health knowledge, attitudes, and cognitive functioning (Gustafson, Hawkins, Boberg, Bricker, Pingree et al., 1994; Carroll et al., 1996); enhance emotional well-being (Gustafson et al., 1993); and reduce utilization of health services without impacting health (Alemi, Mosavel et al., 1996; Gustafson, Hawkins, et al., 1999). If these effects can be consistently replicated, substantial improvements in public health and health care cost savings can be realized among the underserved. In addition, as reliance on online health information and support resources become more common for routine functions such as making appointments and communicating with health professionals (Zallen, 1995), access to IHC becomes an increasingly essential component of health services access and health maintenance.

Barriers to IHC access include those related to technology infrastructure access and those associated with the characteristics of nonusers and the information and applications themselves. Certain populations also have difficulty accessing online health resources because most IHC applications are designed primarily for educated, literate, and nondisabled audiences. Many people have inadequate skills in science, technology, or reading literacy; cannot understand or use health information; have a physical disability; or cannot communicate in English (Williams et al., 1995; Baker et al., 1996; Yom, 1996; Williams et al., 1998; WWW Consortium, 1998).

Underserved populations are keenly interested in using technology including the Internet (US Department of Commerce, 1995; Hoffman and Novak, 1998). Studies show that, with appropriate training, many underserved groups including low-income families (Kinzie et al., 1993; Watkins et al., 1994; Gropper et al., 1995; Bier et al., 1996; Kraut et al., 1996); residents of inner cities, housing projects, and rural areas (McTavish et al., 1994; Alemi, Stephens, Muise et al., 1996); disabled persons (Hassett et al., 1992); the elderly (Ellis et al., 1991); racial/ethnic groups (Gustafson et al., 1994; Pingree et al., 1996); and drug users (Alemi, Mosavel et al., 1996; Alemi, Stephens, Javalghi et al., 1996); can successfully use technology to address health concerns. Studies suggest that low-income consumers are savvy about persuasive marketing communications (Alwitt and Donley, 1996), want independent information when purchasing a range of products (Mogelonsky, 1994), and, thus, can critically evaluate information.

Providing universal access will require a collaborative effort among a wide variety of stakeholders on all levels (Milio, 1996; McCray and Maloney, 1997). Without external intervention, market forces are unlikely to address the needs of those without access. While universal access at home is ultimately desired, for the near term, until home access is universally available and affordable, universal access may necessitate a combination of private (i.e., home) and public (e.g., schools, libraries, public buildings, post offices, shopping malls, community centers, health care facilities, places of worship) access points (Eng et al., 1998). The Telecommunications Act of 1996 provided support for universal access to advanced telecommunications by authorizing universal service discounts to K-12 schools, libraries, and rural health care and public health facilities, but full implementation of the program is uncertain (FCC, 1998). Additional models for supporting access that have multisector backing may be necessary.

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Comments: SciPICH@nhic.org Updated: 05/18/01