Recent statistics show that the World Wide Web has now grown to over 100 million sites: a phenomenal expansion in only 15 years (Mulligan 2007). It has been estimated that there are 100,000 sites offering health related information (Wilson 2002). As the amount of health information increases, the public find it increasingly difficult to decide what to accept and what to reject (Burgess 2007). Searching for information on the internet is both deceptively easy and the same time frustratingly difficult (Kiley 2002). The challenge for consumers is to find high quality, relevant information as quickly as possible. There has been ongoing debate about the quality of information aimed at patients and the general public and opinions differ on how it can be improved (Stepperd 1999). The purpose of this chapter is to provide a brief overview of the different perspectives on information quality and to review the main criteria for assessing the quality of health information on the internet. Pointers are provided to enable both clinicians and patients find high quality information sources. An understanding of these issues should help health professionals and patients to make effective use of the internet.
Health information includes information for staying healthy, preventing and managing disease, and making other decisions related to health and health care. It includes information for making decisions about health products and health services. It may be in the form of data, text, audio, and/or video. (Dzenowagis 2001)
The Internet provides a powerful tool for patients seeking medical information. It offers consumers access to a wealth of health and medical information that can enable them to take responsibility for their own health (Linkous 1999). Information is the communication or reception of knowledge. Such communication occurs in great part through the recording of knowledge(Taylor 2004). Some commentators predict that in the near future the Internet will be an important vehicle for delivering information and medical care. Tom Ferguson coined the term “e Patients” to define those people who were empowered to find medical answers for themselves, rather than rely on any single individual’s opinion or interpretation. Virtual children’s Hospital based the Internet’s first medical Web site since 1993(Risk 2003).
The number of health related Web sites is rising with more 70,000 sites available to patients in 2000. A 2006 survey of 5,007 U.S. adults found that 84% of consumers claimed to have researched a health-related topic online in the past 12 months. (Fox 2006). Another survey reported that eighty percent of American Internet users (some 113 million adults) have searched for information on at least one of seventeen health topics. (Fox 2006). 75% of all adults on line (47% of all adults) use the Internet to look for health information. This amounts to 98 million adults nationwide. (David 2003). On average those who look for health information online do so on average 3.3 times every month(Fox 2006).
Faced with this explosion of online information the main challenge facing today’s information consumer is how to find high quality information that meets their personal needs, within an acceptable time frame. But whilst everyone agrees that information quality is an important consideration, the concept of quality is problematic since in medicine there are often gray areas where the evidence-base is poor, making it difficult to determine a gold standard (Lewis 2005) Quality is an inherently subjective assessment, which depends on the type of the information needed, the type of the information searched for, and the particular qualities of the consumer (Wilson 2002). Experts believe that formal methods are needed to describe and assess information quality. Naumann maintains that “quality is the main discriminator of data and data sources on the Web” (Naumann 2001).
The paradox of quality as Robert Pirsing notes is the fact that “even though quality cannot be defined, you know what quality is” (Pirsing 1974). Although the typical consumer may be able to produce and define what quality means to them, each individual’s perception of the quality of health information will vary depending upon their current circumstances and quality requirements (Burgess 2007).
A recurrent concern about online health information is that anyone is free to publish. Websites are set up by individuals, patient, charities, activist groups, commercial bodies either selling a product, as well as by health care professionals. The overwhelming majority of these resources are informal, quite often with no clinical input (Potts 2006).
Key Terms in this Chapter
Consumer Health Informatics: Consumer health informatics is the branch of medical informatics that analyses consumers’ needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers’ preferences into medical information systems. Consumer informatics stands at the crossroads of other disciplines, such as nursing informatics, public health, health promotion, health education, library science, and communication science, and is perhaps the most challenging and rapidly expanding field in medical informatics; it is paving the way for health care in the information age.
Internet: The Internet is a world wide, publicly accessible series of interconnected computer networks that transmit data by packet switching using the standard Internet protocol (IP). It is a “network of networks” that consists of millions of smaller domestic, academic, business, and government networks, which together carry various information and services, such as electronic mail, online chat, file transfer, and the interlinked Web pages and other resources of the World Wide Web (WWW).
Health Information: Health information is required for a wide variety of purposes, including building knowledge and understanding of health conditions; helping people to decide when they need to seek specialist help; supporting choices in relation to treatment, management or social care options; identifying, choosing and accessing appropriate healthcare providers; and educating patients and the public about public health risks and about primary and secondary prevention.
Quality: Quality is an inherently subjective assessment, which depends on the type of the information needed, the type of the information searched for, and the particular qualities of the consumer. Experts believe that formal methods are needed to describe and assess information quality.