SciPICH: Final Report - Executive Summary

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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Executive Summary

The rapid proliferation of information and communication technologies that have emerged during the last several years has both hopeful and alarming implications for the future. These technologies have already produced profound changes in the US economy and continue to exert increasing influence on many aspects of daily life, including personal health decisions and behaviors, health care delivery and financing, and public health systems.

Evidence of this phenomenon is the growth of interactive health communication (IHC): the interaction of an individual—consumer, patient, caregiver, or professional—with or through an electronic device or communication technology to access or transmit health information, or to receive or provide guidance and support on a health-related issue. IHC applications include health information and support Web sites and other technology-mediated applications that relay information, enable informed decisionmaking, promote healthy behaviors, promote information exchange and support, promote self-care, or manage demand for health services.

The rapid evolution of IHC raises many questions about its impact on public health and health care and our ability to evaluate it. To help clarify these issues, the Office of Disease Prevention and Health Promotion of the US Department of Health and Human Services convened the Science Panel on Interactive Communication and Health (the Panel), a 14-member, non-Federal panel of experts in many aspects of health and technology. This report summarizes the potential risks and benefits of IHC, the underlying science or evidence base for IHC, mechanisms for improving IHC quality and effectiveness, appropriate roles and responsibilities for IHC stakeholders, and relevant major policy and research issues. The report also presents the Panel’s consensus recommendations about national initiatives that are needed to achieve a preferred future for IHC.

IHC applications have great potential to improve health and well-being. Compared to more traditional media, interactive media may have several advantages for health communication efforts. These include: improved access to individualized health information; broader choices for users; potential improved anonymity of users; greater access to health information and support on demand; greater ability to promote interaction and social support among users, and between consumers and health professionals; and enhanced ability to provide widespread dissemination and immediate updating of content or functions.

IHC applications also may cause harm. A growing variety of entities and individuals—many of whom lack adequate expertise and training in the health and communication sciences—are developing, sponsoring, and disseminating IHC applications. The proliferation of applications available to the general public, who may not have the skills or background to evaluate the quality or relevance of applications, raises concerns about their potential to cause harm, their impact on health care quality and cost, the clinician-patient relationship, and the organization of medical systems. Without appropriate attention to these and other issues, IHC applications may result in inappropriate treatment, delays in care, damage to patient-provider relationships, violations of privacy and confidentiality, wasted resources, delayed innovation, unintended errors, and an increased technology and health gap.

To date, few IHC applications have been adequately evaluated for quality or effectiveness. Some health communication interventions have been shown to be efficacious, but research on the effectiveness of computer-based approaches is limited. Potential benefits of evaluation include improved quality, utility, and effectiveness of applications; reduction of likelihood of harm; better use of resources for effective applications; greater participation of stakeholders in the application development and implementation; and improved decisions about use of applications. The Panel has developed an "evaluation reporting template" and a "disclosure statement" to promote evaluation and assist developers in disclosing essential information about their applications to potential purchasers and users.

The Panel has identified several stakeholder groups that need to participate in IHC application development, evaluation, and quality assurance activities if meaningful evolution and quality improvement of IHC is to occur. These include consumers (e.g., patients, families, and caregivers), application developers, purchasers, health professionals, and policymakers, all of whom have related roles and responsibilities. Understanding the concerns, motivations, and perspectives of each stakeholder may be valuable in establishing collaborative efforts and in arriving at a consensus on appropriate directions and policy for IHC.

Currently, most health information policy discussions at the national level are centered largely around issues related to health care, provider-focused systems rather than consumer-focused applications. Major policy issues that are relevant to the development, implementation, and evaluation of IHC applications include standards, privacy and confidentiality, oversight and regulation, liability, accreditation and certification, public investment in development and research, payment and reimbursement, integration of IHC with health care and public health, and access to IHC.

The Panel developed the following vision for IHC:

"Interactive health communication will play an essential role in enhancing health, minimizing total burden of illness, and optimizing relationships between individuals and health professionals."

The Panel proposes four overarching strategies to achieve this vision: 1) strengthen evaluation and quality of IHC, 2) improve basic knowledge and understanding of IHC, 3) enhance capacity of stakeholders to develop and use IHC, and 4) improve access to IHC for all populations. The Panel considers widespread evaluation of applications and dissemination of evaluation results to be the primary mechanisms to improve quality of IHC and to ensure positive outcomes. Because of the newness of the field, scientific knowledge about many aspects of IHC is very limited. Greater knowledge is needed to improve the effectiveness of IHC, inform application design and implementation, and, ultimately, further appropriate public policy. The Panel also identified major gaps in resources available to application developers and shortcomings in the skills of users. These deficiencies will need to be addressed to ensure the continued development of innovative applications and the ability of intended users to take full advantage of IHC. Finally, enhancing access to IHC for all populations is essential because, without equitable access, evaluation efforts will be incomplete and the potential for IHC to provide benefits to entire communities is not likely to be realized. Specific recommendations under each major strategy follow.

Strategy 1. Strengthen Evaluation and Quality of IHC

Purchasers of IHC applications should require developers to integrate evaluation methods into product development and implementation as a condition of purchase.
Developers should publicly disclose information about their IHC application including identity of developers and sponsors, purpose of the application, source(s) of content (including disclosure of advertising), privacy protections, whether and how the application was evaluated, and the results of evaluations.
Developers of IHC applications should adopt voluntary quality standards for application development.
As a primary criterion for their review and rating of IHC applications, individuals and organizations that conduct reviews of applications should include information on whether and how the application was evaluated for effectiveness.

Strategy 2. Improve Basic Knowledge and Understanding of IHC

Public and private sector organizations with an interest in health and technology should establish a formal process for identifying and addressing current knowledge gaps and priority areas for basic and applied research, application development, and demonstration projects.
A cross-governmental and interagency initiative to coordinate Federal and State funding in the area of IHC should be established.
A long-term initiative to monitor and assess the health, economic, and social impact of IHC should be established.
Programs to monitor and analyze trends in IHC policy development should be established for the purpose of improving policy.
Entities responsible for assuring the quality of personal health services, in conjunction with appropriate government agencies, should determine where responsibility and authority rests for ensuring the privacy, confidentiality, and security of IHC-related information.

Strategy 3. Enhance Capacity of Stakeholders to Develop and Use IHC

A clearinghouse for public domain objects and tools, raw materials, and information resources for IHC applications should be established for public use.
Government agencies, foundations, and investors should strongly encourage IHC developers to explore academic-industry collaborations and other partnerships that enhance application quality and evaluation by funding developers who propose these activities.
Programs to monitor and improve public literacy in health and technology should be supported by government agencies, private foundations, corporations, and nonprofit organizations.
Health professional schools should include IHC in core curricula to promote its integration into clinical practice.
Performance indicators that monitor health plan efforts to help members and patients locate and critically assess health information and support resources should be developed and implemented.
Process and organizational models for effective implementation of IHC applications should be developed and evaluated.
Financial models should be developed and tested to determine whether they support appropriate use of effective IHC applications.

Strategy 4. Improve Access to IHC for All Populations

Entities with an interest in health and technology should promote public and professional education about the availability, selection, and optimal use of high-quality IHC applications.
Public-private initiatives to enhance access to IHC among the underserved should be established.
Mechanisms and models should be established to fund the development and implementation of orphan applications, including applications for underserved populations.

There is little doubt that IHC applications will continue to grow in utility and popularity and consumers will increasingly turn to them for health information, communication, support, and health-related transactions. IHC has the potential to dramatically improve the ways in which people prevent disease, maintain their health, and recover from illness. However, for IHC to play a pivotal and positive role in creating a healthier society, a broad range of stakeholders must participate in application development and evaluation. An evidence-based approach to the development and diffusion of IHC applications is central to the process of ensuring that such applications are of high quality, effective, and accessible to all.

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Comments: SciPICH@nhic.org Updated: 05/09/01