By Robert Kiley and Elizabeth Graham. The Royal Society of Medicine Press, 2001, £9.95 (pb), 320 pp. ISBN 1-85315-498-9
Individual people, whether they are healthy or indisposed, have sought medical advice from many sources. These have included authoritative sources including physicians and other health care professionals, but in large measure advice from friends, relatives, and other patients. Books with information about symptoms, diagnosis, and home remedies have always sold well.
It seems that many more of us are taking an increasingly active role in maintaining and improving our own health than ever before. With the information explosion and ever increasing levels of new information, it is not surprising that many are turning to health and medical Web sites for up-to-date information. A survey of 1000 residents of the State of Michigan (US) as long ago as 1998 showed surprising penetration of use of the Web. Fifty-one percent reported using the Web at some point either at work, home, or the library. Fifty-four percent had computers at home.
When ‘surfing’ the Web most of us find the amount of information available overwhelming. This leads to both difficulty finding the specific bit of information one desires, and a great concern about the accuracy of the information presented. After all anyone can establish a Web site and say anything she or he wishes.
Robert Kiley and Elizabeth Graham have written a soft cover book entitled ‘The Patient's Internet Handbook' whose avowed purpose is to ‘introduce you to the wealth of information available on the Internet…’ and ‘explain how you can find information specific to your needs’. This is a tall order under any circumstance.
The book may be thought of as having three sections.
The first section is primarily a how-to primer for becoming connected to the World Wide Web and the use of various programs to make use of the connection. It includes technical information about how to connect to the phone lines, a survey of search engines, a list of health topics, a very general discussion of issues of quality of material found, and a directory of support groups.
The phone line connection information is primarily useful in the UK. The material occasionally uses highly technical words, but many are explained in enough detail for general understanding. There is probably insufficient information for the complete novice to get connected, but an individual who is not technology shy and has some basis of understanding about computer basics should have no trouble following the instructions.
Several medical database sources are covered including Medline, Cochrane Collaboration, Complementary and Alternative Medicine Citation index. The listings are more comprehensive than most and include some information about the relative quality of each. Unfortunately several of these sites are designed for medical professionals and the language may be difficult for others to understand. This point is not made in text.
Discussion lists of several types are mentioned including consumers Medline, NHS direct, and patient UK. These are all consumer-oriented and the discussion is short but informative. There is a minor difficulty with the discussion in that the authors assume that all discussion lists are like a Listserv in mechanics. That is not always correct. A set of ‘good practice guidelines’ are given that are very useful.
The second section is a subject-oriented approach to health information. Included are such things as NHS services on the web, how to find hospitals, GPs, dentists, etc. The authors point out that these sources vary a great deal in content. Some have very little information and some have all one would want. Although not stated, in the US, the data are even more variable than in the UK.
A potentially very important chapter discusses how to evaluate the quality of internet sites. This is a very difficult subject and the advice given is very general. Some of the suggestions may be helpful to readers, but the necessary lack of specifics limits the practicality. Most organizations have simply recommended a small set of sites of recognized quality. The authors speculate that some GPs may react badly to information-seeking patients who come in with a large set of downloaded material. This shift in focus for the chapter dilutes the focus, especially since the authors have no suggestions about how to deal with the negative response.
The third Section takes up a majority of the book. It is devoted to 100 specific medical conditions and the Web addresses (URLs) of organizations or self-help groups interested most directly in that disease. This is potentially a very useful section. Unfortunately, no information is given about when the sites were last accessed. Recognizing that these addresses turn over frequently, I accessed 10 of them randomly. Four were immediately available as listed. Two were not available as the specific reference listed. However, the organization was present, and if one knew how to go to their home page, some information could be obtained. Four could not be found.
In the first two sections, URLs are generally listed in context of the section and may be more difficult to find when wanted. The authors maintain an internet site for the handbook. It includes a quarterly bulletin section to list new and potentially useful sites as well as an extensive list of sites that are incorrect or have changed since publication. This is a very helpful resource and when used in conjunction with the handbook increases its usefulness many fold.
In general, this is a useful book if one accepts the limitations imposed by the nature of the World Wide Web. The book suffers from the inherent downside of the major strength of the Internet, namely an unbelievably large amount of data. The accompanying ills include no gathering of the data into useful information and no quality control. For those reasons, the best use of this handbook is probably as a reference manual rather than as a book to read from cover to cover.