At the Crossroads: The Intersection of the Internet and Clinical Oncology

Introduction

It is becoming increasingly common for a patient to arrive at an appointment with a health professional clutching a handful of printouts obtained from a search of the Internet. Surveys have found that health and medicine resources are the most frequently accessed sites on the Internet.[1] Characterized as “the worldwide grand rounds,”[2] the Internet is revolutionizing the delivery of health information by providing patients and family members access to a myriad of resources previously available only to health care professionals.[3] Patients also are participating in on-line discussions with other patients,[4] as well as seeking the views of numerous health care professionals who offer medical advice, prescriptions,*[5] or psychotherapy[6] via the Internet. (One such web site, Cyberdocs [www.cyberdocs.com], offers a “virtual house call” service whereby physicians provide medical advice and write prescriptions. The participating physicians reside in Massachusetts and limit their services to residents of that state because of the unsettled legal questions about licensure and practice of medicine over the Internet.[5]

*Telemedicine is the practice of health care delivery, diagnosis, consultation, treatment, transfer of medical data, and education using interactive audio, video, or data communications. Typically, telemedicine programs focus on providing rural populations with access to consultations with medical specialists located in urban areas or affiliated with major medical institutions.

There is nothing new about patients asking their doctors about treatments that they have learned about from word-of-mouth accounts, news reports, advertisements,[7] or medical reference books written for lay people.[8] However, with countless medical web sites, ranging from internationally respected academic medical centers to herbalists operating a neighborhood health food store, the Internet has dramatically increased the volume of opinions and information available to patients. Some physicians now report that as many as one-third of their patients utilize health information from on-line resources.[7]

Although the Internet has enormous potential for informing and educating the public about health and medical care, it also has potential for causing significant harm through the dissemination of erroneous, misleading, and deceptive information.[2,3] Most importantly, patients’ use of the Internet is altering the dynamics of the patient–health care provider relationship by challenging the authority of health care professionals as ultimate providers and arbiters of medical information.

This article describes ways that the Internet and the practice of clinical oncology are intersecting. It also explores various strategies that clinical oncologists can employ to develop proactive responses to patient concerns created by their access to Internet-based cancer resources. These strategies are based on several different experiences of the authors: (1) the development and support of a web site on the genetics of cancer[9]; (2) the genetic counseling of patients and families concerned about hereditary forms of cancer; (3) an analysis of the legal aspects of health care professionals’ use of the Internet; and (4) the application of principles of learning theory and information utilization.

The Internet

The Internet is anticipated to have as significant an impact on the lives of average citizens as did the telephone in the early part of the 20th century and television in the 1950s and ’60s.[10] Until the advent of the personal computer, computers were the province of science, engineering, and business.[10] By 1998, approximately 40% of the 100 million US households owned a personal computer, and one-third of these homes had access to the Internet.[10] In addition to accessing the Internet with privately owned computers, many Americans surf through cyberspace from terminals provided by schools, public libraries, and community organizations. With the introduction of television-based Internet access systems, such as WebTV, and the increasing affordability of personal computers, the Internet is rapidly becoming a universal utility as ubiquitous as the telephone.

The Internet is a worldwide system of computer networks developed during the late 1960s and ’70s by the US Department of Defense as an experiment in the construction of computer networks resistant to nuclear damage.[6] With the development of more sophisticated electronic technology and new computer applications, the network extended into other government departments, then to academic institutions, and eventually to various global sites.[6] Beginning in the late 1980s, the public gained access to the Internet through commercial providers of on-line services (eg, America Online and CompuServe).

The introduction of the World Wide Web (WWW or Web) in the early 1990s was instrumental in the rapid expansion of the number of Internet users. With the help of a graphical browser, the Web provides users with the ability to view pages containing text, graphics, and links to other sites.[11] These pages are posted and maintained by government agencies, nonprofit organizations, academic institutions, commercial entities, and private individuals.

The concept of the Internet is not limited to the Web. In addition to web pages, the Internet allows users to communicate via electronic mail (e-mail) and other forms of electronic transmissions, thereby facilitating both instantaneous and asynchronous exchanges of information, visual images, and sounds.

Advantages of the Internet for Oncology Patients

Many patients view the Internet as a source of empowerment that enhances their health care decision-making, as well as their interactions with health care providers and others.[7] Oncology patients are often desperate for information and solace because of the ramifications of their diagnosis and the physical and psychological challenges of cancer treatment. Individuals diagnosed with inherited types of cancer may also feel responsible for informing family members about their need to undergo screening and/or make lifestyle changes.

Patients with a range of concerns are frequent consumers of Internet-mediated information and are participating in Internet-based support groups in increasing numbers.[3,4,7,12] Clearly, the ease of information retrieval and exchange gives the Internet a significant advantage over other information retrieval and communication methodologies for individuals dealing with anxiety and any physical limitations generated by their condition and treatment.

The Internet offers the lay individual diagnosed with cancer access to a myriad of resources, each containing extensive, detailed databases on health care providers and treatment options. These include resources available only in libraries located within medical schools and medical centers (eg, index and abstracting services, such as Medline, and on-line versions of medical journals). The Internet is making this information accessible at almost lightening speed to anyone with a computer and modem.[13]

In addition, the Internet has the potential for providing access to information resources previously unavailable to underserved populations and to those with physical limitations. These include individuals who do not speak English (eg, www.y-me.org, the Y-ME web site modules designed for Spanish speakers), persons located in rural locations, and those with physical and/or communication disabilities (eg, cerebral palsy, autism, or hearing impairments) whose preferred mode of communication is becoming the Internet.[6,12]