home- or community-based care; the creation of com- mercial and free networks at thenational, state, and local level, and the discovery that health information.
SYMPOSIUM Partnerships for networked health informas tion for the public Edited by Mary Jo Deering
CONTENTS Introduction Mary Jo Deering
Consumer health information demand and delivery: implications for libraries Mary Jo Deering and John Harris
Los Angeles Free-Net: an experiment in interactive telecommunication between lay members of the Los Angeles community and health care experts Avrum Bluming and Phillip S. Mittelman
Electronic networks, community intermediaries, and the public's health Nancy Milio
Intellectual property and networked health information: issues and principles Fred H. Cate
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INTRODUCTION Electronic consumer health information is at the intersection of many dynamic developments: the broader concept of health as including wellness, prevention, and the effects of the environment; trends in health care away from hospitals toward ambulatory, home- or community-based care; the creation of commercial and free networks at the national, state, and local level, and the discovery that health information is a popular service for these networks; the perception by traditional health information providers that the new media offer intriguing opportunities to reach audiences; and the economic incentives of health care cost-containment and market opportunities. These trends have many implications. Individuals have an increased responsibility to take better care of themselves and their families and make a range of decisions about medical care. Prevention, patient education, and the management of health and disease require an information infrastructure that links homes, hospitals, clinics, schools, worksites, and community settings. Perhaps most important, there is a wide range of players and there are tantalizing prospects for new partnerships among them.
informed consent and patient rights, personal risk of breast cancer, and more. Forums or support groups addressing acute or rare diseases are especially wellorganized; examples are the University of Pennsylvania's OncoLink and the American Cancer Society Forum on America Online. The federal government itself is a major source of online information, providing clearinghouses like the National Health Information Center, Web home pages; and specific electronic products like the National Cancer Institute's PDQ databases from the National Library of Medicine and the Office of Disease Prevention and Health Promotion's Put Prevention into Practice. These telecommunications developments will dramatically change the doctor-patient relationship. Much of the change will be beyond our control. Patients with easy access to a wide and deep pool of health information will have different presentations to and expectations of their physicians. Smarter patients can become more demanding, and may tailor their own treatment from many different sources.
CHALLENGES KEY CHANGES
The health care industry is changing rapidly. The system has been specialty-driven and hospital-based, which has made it unaffordable and inaccessible to many people. Now the disease model that has dominated medical care is being modified by a recognition of the complex social and environmental factors that influence health. Other new influences include managed care, with an emphasis on cost-effectiveness; the movement toward community- and even home-based care; and the increased role of the patient in navigating the health care system and making health decisions. The new technology delivers incredible health information resources-some text-based, others interpersonal. While there is no authoritative count of health-related databases, World Wide Web and Gopher sites, and other resources on the Internet, diverse efforts to assess the scope of online health information suggest that the sheer quantity is staggering [1]. One major company developing a special online health network estimated that up to one-third of current Web sites are health related. As intellectual property and pricing issues are resolved, major publications like the Mayo Clinic Family Health Book, which are currently available only in print or on CD-ROM, will appear online. Interpersonal exchange is equally huge and dynamic. On any given day, chat groups or forums cover informed decisions on alcohol treatment, choosing therapists and other medical services, how to interview a physician, 206
The promise of this technology to improve health is clouded by several challenges. Focus groups of health information consumers indicate that there are problems arising from information overload and confusing, even conflicting, information [2]. Two analogies are often used to describe the first problem, each suggesting a particular approach to resolving it. One image is that of drinking from a fire hose-which implies the need for "spigots" along the stream from which more controlled doses of information may be drawn. Such spigots might be highly specialized to serve specific populations, such as the elderly, family care givers, a particular ethnic group, or those with a given health concern or condition, such as infant care, chronic disability, or cancer; or they could be general-purpose spigots that simply offer smaller increments of information. Another common image is that of an ocean where specific skills are needed to chart a course and special navigational tools are needed to read the markers, avoid shoals, and reach the desired destination most efficiently. The problem of ensuring quality is more intractable in a democratic, information-rich society. It is both unacceptable and impossible to censor all medical quackery or eliminate material of dubious value or accuracy in the thriving information marketplace. It is also impossible to control secondary-information publishers, who can easily modify digital content, obscuring the original source and possibly diminishing the integrity of the material. It is hard to resolve the less grave problem of mixed messages that may come from equally reputable sources. Our society must Bull Med Libr Assoc 84(2) April 1996
Introduction
find ways to reconcile the competing public interests of information-related freedoms and enhanced health, not to mention legitimate commercial interests. There are also well justified concerns about equitable access to this potentially life enhancing-even life saving-information. At a time when the educationally or economically challenged face heavier health burdens, their parallel disadvantage regarding information technology is troubling. This is particularly true because the new media appear to offer additional benefits for absorbing health information [3, 4]. It is unlikely that the disadvantaged will enjoy many home information-technology appliances in the near future. Where, or through whom, can they get health information? THE ROLE OF LIBRARIES
Clearly, libraries and librarians can make major contributions. Librarians report that health issues are among the top three to five concerns for their patrons [5]. Studies estimate that as many as 10% of all reference questions-or as many as one million each week-are health-related [6]. As information organizers and managers, libraries bring helpful structure to the disparate mass of health information. As information-retrieval specialists, librarians couple an ability to clarify the patron's real health question (as opposed to the question initially posed) with searchmapping skills to help locate the most useful information. Studies confirm that people's frequent reliance on an information intermediary is not a function of income or education [7, 8]. The role of libraries in quality assurance is less straightforward. They incarnate the principle of freedom of information and should not be expected to censor any material. Yet, through the skill of librarians, patrons can be helped to recognize reputable sources. CONCLUSIONS Networked health information is clearly of potential value to individuals and families, health care providers and insurers, companies and communities, and public and private agencies. The private sector may become increasingly involved out of self-interest, or with the encouragement of public laws and incentives. The government may have to become more active in addressing issues of quality and access. At a minimum, the federal government may have an obligation to ensure that standards are developed and applied to the information it produces and to improve access to its own information for people in their homes and communities. These standards and access priorities may be applicable to the broader body of networked consumer health information. The public and Bull Med Libr Assoc 84(2) April 1996
private sectors both have an opportunity to collaborate with public and medical libraries to facilitate easier access both for those with no other available channels and for those who value a skillful information navigator. PAPERS IN THIS SYMPOSIUM The first conference on "Partnerships for Networked Health Information for the Public," held in Rancho Mirage, California, in May 1995, started the process of identifying all the parties who have an interest in these issues. Four of the conference presentations were prepared as formal papers for this Bulletin symposium section. * Mary Jo Deering and John Harris present the findings from a preliminary assessment of consumer health information demand and delivery. This report shows the complexity of the subject: there is no "typical" health information consumer, health information content, or health information provider. Fred Cate provides insight into the intellectual property issues related to networked health information. The library community has been at the forefront of copyright debate for decades, helping to preserve the principle of fair use. Digital material and electronic channels pose many new problems. Avrum Bluming describes the contributions of Free-Nets, nonprofit networks that often provide both human connections and information to people with health problems. They often link to libraries and other community access points. Nancy Milio addresses the need for a community health information infrastructure to support individual and public health. Her paper underscores the ways in which libraries serve this vital function. Mary Jo Deering, Ph.D. Director, Health Communication Staff
Office of Disease Prevention and Health Promotion U.S. Department of Health and Human Services 200 Independence Avenue, S.W., Room 740-G Washington, D.C. 20201
* The full set of conference materials, including a summary report, is available on the Internet at http://nhic-nt.health.org/nmp/ conf.htm. Print materials and a two-hour video are available from the National Health Information Center, P.O. Box 1133, Washington, DC 20013-1133; 301/565-4167. Information about the second "Partnerships" conference is also available from the same sources.
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REFERENCES 1. NATIONAL HEALTH INFORMATION CENTER. Selected public health information resources on the Internet. Rockville, MD: The Center, 1994 Oct. 2. DEERING MJ, HAsRIS J. Consumer health information demand and delivery: implications for libraries. Bull Med Libr Assoc 1996 Apr;84(2):209. 3. FERGUSON T. Consumer health informatics. Healthcare Forum J 1995 Jan/Feb:28-33.
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4. HARRIS L, ED. Health and the new media: Technologies transforming personal and public health. New Jersey: Lawrence Erlbaum Associates, 1995. 5. DEERING, Op. cit. 6. IBID. 7. IBID. 8. REES A, ED. Consumer health information source book. 4th ed. Phoenix: Oryx Press, 1994:10.
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