The Patient's Internet Handbook.

Given the ever-increasing number of guides to health care information on the Internet (“Internet” and “Web” are often used interchangeably), consumers can afford to be selective. The book under present consideration, The Patient's Internet Handbook, by Robert Kiley and Elizabeth Graham, purports to introduce the “wealth of health information on the Internet, and explain, through examples, how you can find health information specific to your needs. With this information, you can become more informed about your health and play a more active role in the healthcare process” (pp. 4–5). The authors wisely qualify their goal by cautioning readers that neither the Internet nor The Handbook should substitute for the expert opinion of a trusted health care professional. Throughout, they reiterate that the safest and most effective way for consumers to use the information they find on the Web is to prepare them to ask better-informed questions of their health care providers. While access to such information as is contained in PubMed may indeed help equalize the doctor-patient relationship, “it is important that any information derived through such sources is shared and discussed with the appropriate healthcare team. …[who] have access to a patient's complete medical history and thus can make an informed judgement on how any piece of research can be applied to a specific patient” (p. 59). The authors are eminently qualified to write a guide to accessing, evaluating, and effectively utilizing Internet-based health care information. Both are experienced information specialists at the Wellcome Library for the History and Understanding of Medicine at the Wellcome Trust. Kiley has written two other books on medical information on the Internet and edited the bimonthly journal, Health Information on the Internet, from 1998 to 2000. Graham is an experienced Internet user and information service manager at the Wellcome Library. Both have post-baccalaureate credentials in librarianship. Not surprisingly, the book is very well organized, providing readers with a “clear navigational structure.” The Handbook is divided into five parts, the first part predictably covering such introductory topics as types of health information available on the Internet; choice and evaluation of hardware (e.g., modems), software, and Internet service providers (ISPs); browser configuration; and email use. Admirably, while the discussions are necessarily cursory, the authors illustrate concepts, techniques, and strategies, using both of the major browsers, Netscape Communicator and Internet Explorer. Unfortunately, the discussion of ISPs is useful only for readers in the United Kingdom. (The Handbook's decidedly British flavor and the implications for its utility for U.S. health care consumers is discussed below.) Section two, “Searching for Information,” which along with section three constitutes the core of the book, looks at health information resources on the Web, as well as basic strategies for maximizing their use. Separate chapters are devoted to search engines, Web directories, and evaluated gateways (notably MEDLINEplus); exemplary medical databases (MEDLINE, Cochrane Database, and the National Center for Complementary and Alternative Medicine's CAM Citation Index); discussion lists (e.g., Listserv); and newsgroups. The discussion is quite expert and comprehensive in the section on search engines. For example, the authors highlight the Northern Light search engine as well as Altavista and Google, however, Northern Light is no longer available (at least in any recognizable form). In hindsight, HotBot may have been a wiser choice. These rapid and constant changes in the availability and location of Web-based resources are oft-mentioned drawbacks of all such Internet guides. The detailed, comprehensive discussion of MEDLINE and PubMed is masterful and could be used to good effect for bibliographic instruction in many settings. While it is inevitable that, given the existence of the vast and ever-increasing number of Internet-based health information resources, reasonable minds will disagree with some authorial choices, this reviewer laments that HealthWeb and Medscape—both excellent, comprehensive evaluated medical portals—did not make the cut. Moreover, mention of specialized English language, health information search engines such as Citeline, MedHunt, Medisearch/Mirago Health (United Kingdom), and Echidna (Australia) in future editions of The Handbook would be most welcome. With section three, “Your Health and the Internet,” the authors take a somewhat more subject-oriented approach to the continually expanding universe of health-related, Web-based resources. They include separate chapters on drug information; complementary and alternative medicine; and pregnancy, childbirth, and infant care resources on the Internet. In addition, a chapter is reserved for a discussion of National Health Service (NHS) services on the Internet, which is likely to be of interest only to U.K. readers. Section four, “Keeping Safe,” includes extended discussions of misinformation on the Web and of criteria for evaluating medical information. While no new ground is broken, the discussions are straightforward and accessible to most readers. As mentioned above, the authors view the use of medical information found on the Web—however well vetted, evaluated, and synthesized—as being most effective to better inform and educate patient-consumers for visits with health care providers. Accordingly, in “The Empowered Patient?” chapter, they include a very useful table that summarizes some “dos” and “don'ts” of presenting Web-based research to professionals. Some of the advice is common sense and some more or less realistic, but the tabular summary is best considered a very helpful gloss on facilitating a productive patient consumer mind-set. The final section of The Handbook, “100 Medical Conditions: Sources of Information on the Internet,” is exactly that: a list of Web-based medical information resources organized by medical condition. Resources listed for each condition include support group contact information, online discussion lists, online newsgroups, and a select list of online summaries. The U.K. emphasis is here in evidence. For example, mad cow disease is cross-referenced to Creutzfeldt-Jakob disease—a disease not likely to make the top 100 in a U.S. publication. Moreover, British spellings abound, for example, “leukaemia,” “haemophilia,” “cot death” (however, with cross-reference to SIDS), and “coeliac disease,” to name but a few. While such orthographic variances are second nature to medical librarians, they may pose an obstacle to lay readers in the United States. The authors readily acknowledge that the availability and location of Internet resources is in constant flux. Accordingly, a companion Website is available that provides readers with URL corrections and updates and a quarterly bulletin that compiles new sites of interest. Moreover, readers can freely sign up to receive email notifications of URL changes and additions. While some resources will inevitably slip through (e.g., the BIOETHICSLINE database is now the BIOETHICS Information Retrieval Project; is no longer hosted by the National Library of Medicine, but by the Kennedy Institute of Ethics at Georgetown University; and is now at http://www.georgetown.edu/research/nrcbl/ir/bioline.htm), the site is a very useful mechanism for dealing with the unpredictability and instability of the rapidly growing and resource-dense Internet. It must be emphasized that the decided U.K. orientation of The Handbook in terms of spelling, diction, and, most importantly, resources included or excluded limits its utility to U.S. patients. Briticisms abound. In addition to the British spellings of disease terms and inclusion of sections focusing on such British institutions as the NHS and General Medical Council (GMC), the authors include sections called “Preparing for the Consultation,” “Endpiece,” and “GP Surgeries.” Conversely, this emphasis on U.K. Internet health information resources might make the guide a useful addition to the reference sections of many U.S. medical library collections. It will certainly be of use to patients in the United Kingdom. Moreover, depending on prevailing exchange rates, The Handbook's price, £9.95, is very affordable for such an attractive and useful volume. Kiley and Graham have produced a well-researched, clearly organized, and cogent guide to health care information resources on the Web. Whereas their discussions of using search engines, directories, and evaluated portals and of searching medical databases are very accessible and have universal appeal, The Patient's Internet Handbook is especially valuable for any patient-consumer or information professional interested in making better use of U.K. Internet-based information resources.