Thank you for inviting me here today to share with you the activities of the Department of Health and Human Services (HHS) in the field of consumer health informatics (CHI). HHS includes the Administration on Aging, the Administration on Children and Families, the Agency for Health Care Policy and Research, the Agency for Toxic Substances and Disease Registry, the Centers for Disease Control and Prevention, the Food and Drug Administration, the Health Care Financing Administration, the Health Resources and Services Administration, the Indian Health Service, the National Institutes of Health, and the Substance Abuse and Mental Health Services Administration.

Like you, we believe this dynamic field suggests many opportunities for enhancing individual and public health. Americans today are being called on to take increasing responsibility for their own health and that of their families. The decisions they make may also contribute to more appropriate and effective use of our medical care system and help raise the overall health status of our communities. Timely and effective consumer health information, delivered through the emerging interactive technologies, could be a powerful tool.

In my testimony, I will discuss the steps HHS is taking in several areas: (1) the direct provision of information through these technologies, (2) coordination to improve access to CHI, (3) partnerships with other public and private organizations to extend the reach and impact of CHI, and (4) R&D and evaluation. I will end with comments about a continuing concern: how to meet the needs of all populations, especially those who may be doubly disadvantaged with heavier health burdens and less access to technology.

I am basing my remarks on Secretary Shalala's recent report to Vice President Gore on HHS' activities in consumer health informatics. Copies of this document have been submitted to the committee.

For detailed lists of specific HHS efforts, I would direct your attention to attachments A and B of the Secretary's report. We are proud of the diversity and quality of these activities. Their continued growth is a reflection of the creative energy of our individual agencies and our department-wide Internet Laboratory. Let me highlight just a few of these activities.

• Among its many electronic activities, the Agency for Health Care Policy and Research has a full-text retrieval system, developed with the National Library of Medicine, that provide free electronic access to their clinical practice guidelines. Most materials can be ordered online through AHCPR's electronic ordering feature.
  
• The Centers for Disease Control and Prevention offers travelers information and reports on prevention recommendations.
  
• Individual institutes at the National Institutes of Health have posted publications and other material derived from their wide array of research activities. Collectively, NIH is assembling a set of popular NIH consumer health materials to provide through a single point of entry.
  
• The National Library of Medicine recently launched Internet Grateful Med, an easy-to-use application for searching the vast bibliographic database of NLM by keywords.

However, this wealth of information brings problems. There is a need for navigational assistance. HHS is working to make it easier for consumers to find the information they need both internally, through its home page, and across agencies, through electronic linkages and specific CHI development efforts. For example:

• The HHS Home Page includes a sub-page on Consumer Information. As mentioned in the Secretary's report, we have been working to improve this. The new page was just launched, and I have brought examples of the new HHS Consumer Information page. The public can easily choose subjects from a list of popular topics or a complete list divided into alphabetical sections. These lead to a database of 1,000 government agencies, national associations, and other organizations providing health information and referrals to the public that is now maintained by the National Health Information Center (NHIC), an HHS-funded clearinghouse. It includes all our own HHS information sources.
  
• In cooperation with the Internet Lab, an interagency group led by the Office of Disease Prevention and Health Promotion is now developing a prototype electronic Gateway to Federal Consumer Health Information. Oversight is provided by an HHS committee, working with public and medical librarians. The prototype Gateway is just completing a "proof of concept" test phase. Based on the results, a proposal for further development and a budget will be prepared.

The Gateway seeks to simplify access to key health materials while alleviating the problems of "information overload," duplication, and currency. It will contain both summaries and full-text files for hundreds of health publications produced by the U.S. Government. The summary also tells how to contact the sponsoring agency--by telephone, mail, or the Internet--to order a printed copy of the publication or get help in locating more in-depth information on the topic. The user can "click" on the sponsoring agency's Internet address and go directly to that source. The Gateway does not seek to limit access to the full range of online information. On the contrary, it proposes to provide a "first stop" which may in fact satisfy the user's needs, with links outward to related Federal sites.

Many HHS agencies and other Federal agencies provide consumer health information. While each has a specific information mandate, we are often addressing the same audiences or providing information about issues that cut across agencies. HHS' goal has therefore been to introduce agencies to each other--so that they can know what each other is doing--and to new approaches--so they can do it better and more efficiently.

Coordination has been advanced through several channels. Federal health information and education staff have been convened in informal meetings and symposia for nearly eight years. Five of these sessions have focused on new communication technology; others focus on shared concerns like reaching specific populations. HHS staff have co-chaired the Consumer Health Information subgroup of the Information Infrastructure Task Force's Health Information and Applications Work Group (HIAWG) since its inception in April 1994. A copy of that group's White Paper was attached to the Secretary's report. In addition, HHS chairs the steering committee for the national conferences, Partnerships for Networked Consumer Health Information, which I will discuss shortly. Representatives from other Federal agencies and private entities sit on that committee.

The Department plans to establish an internal CHI workgroup to help strengthen and coordinate HHS activities, building on core staff from all three of the above efforts. The workgroup will include representatives of all HHS agencies and offices with CHI missions, along with representatives from Public Affairs and Information Resources Management, and the Internet Lab. Representatives from other Federal agencies will also be invited to participate. The workgroup's responsibilities could include oversight of the HHS consumer health information home page and the Gateway project. It could also take the lead in identifying issues and opportunities for improving CHI activities across Federal agencies and with the private sector.

Public-Private Collaboration: Partnerships for Networked Consumer Health Information

In 1994, HHS convened representatives from the public and private sectors to develop a series of national conferences to explore emerging CHI activities and clarify respective roles and responsibilities. The first and second national conferences, Partnerships for Networked Consumer Health Information, took place in California in May 1995 and May 1996. The third conference will be held in Washington DC in April 1997. The conferences also provide the context for more in-depth analysis of key issues by public- private teams. These have included intellectual property, consumer health information demand and delivery, promoting the quality and integrity of online information, cost-effectiveness, universal access, and health information community networks. Next year, groups will focus on reaching the underserved, doctor-patient communication, online self-help groups, CHI in managed care, evaluation, and policy issues. Recommendations and reports from these discussions are issued by various partner organizations.

HHS agencies are working directly with libraries and community networks, and also with private entities like IBM's online Health Village project, America OnLine, and America's Housecall Network to facilitate the inclusion of HHS materials and information into these services.

Evaluation and R&D

Recognizing a need to develop the knowledge base for interactive CHI, the department is supporting a variety of evaluation efforts. The Agency for Health Care Policy and Research has funded assessments of some of the leading research-based applications. The National Cancer Institute's Small Business Innovation Research (SBIR) grants have supported the initial R&D for interactive cancer prevention projects such as nutrition education programs.

The HHS Office of the Assistant Secretary for Planning and Evaluation and the Office of Disease Prevention and Health Promotion are jointly sponsoring a Science Panel on Interactive Communication and Health (SciPICH). The panel includes leading academic researchers in both interactive health applications and instructional technology. The panel itself will not evaluate specific applications or technologies. Instead, it will identify evaluation metrics likely to have the greatest predictive power for judging effectiveness as well as those most relevant for public policy interests. The panel's work will provide the basis for a research agenda that can help guide the efforts not only of HHS agencies but the academic and business communities as well.

Populations With Special Needs

HHS is especially concerned about vulnerable populations, who are most at risk for illness and premature death and are likely to lag behind in access to technology. These include people with special literacy or language needs, and also those with disabilities. In order to reach these and other populations more effectively, we must maintain and strengthen other communication efforts, including outreach through channels like community organizations and libraries. We need to think creatively about reaching them where they live and work. We must make it easy for these groups to stay connected to us by telephone or by adapting our electronic access.

Conclusion

The vision of a ubiquitous network linking individuals to health information that is vital for themselves and their families may become a nightmare of tangled links and overwhelming content as new CHI providers (public and private) rush onto the Internet. The Federal interest is to preserve both the diversity and quality of information while enhancing the likelihood that users can actually find what they need, when they need it, and in a manner that suits them.

As we look forward to the opportunities for health improvement that this technology appears to promise, we should all remember that origins of health-related behavior are pretty complex. In the 32 years since the first Surgeon General's report told us that smoking is harmful, we have learned a lot about how to help people move from knowledge to action. The new interactive technologies may be more powerful if we make sure to incorporate this knowledge. We have also learned that it is unproductive to target a mythical "John Q. Public" as some isolated individual. We know we must reach people as members of families and communities, as patients and caregivers. We must build on all our experience with health communication to harness the potential of consumer health informatics.