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

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

ABSTRACT: The Internet is rapidly becoming a third party in the doctor-patient relationship. The World Wide Web, electronic mail (e-mail), and discussion groups have dramatically increased the quantity of medical and health information available to patients, who, in turn, vary greatly in their understanding of that newly discovered information. This article reviews the advantages and disadvantages of the Internet for both oncology patients and physicians. This forms the background for a discussion of three steps that clinical oncologists and other health care professionals can take to direct and control the potential of the Internet so as to optimize patient care. These steps include: (1) finding out what type of cancer information is being disseminated on the Web; (2) using Internet-derived material that patients bring to the clinic as a stepping-stone for patient education; and (3) becoming an active participant on the Web. Each of these strategies requires health professionals to be proactive. The appropriate and effective use of the Internet, as well as its boundaries, are rapidly expanding in medicine and are likely to co-evolve with changes in patient–health care provider relationships. [ONCOLOGY 13(4):577-583:1999]

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]

Selected “Webliography”

The following list includes a sample of quality web sites that
provide information on cancer directly, as well as maintain links to
other sites. The sites included were chosen to give readers an idea
of the range of sites available. There are numerous others, and the
exclusion of a site is not meant to convey a judgment on its quality.

Amercan Cancer Society (www.cancer.org)

American Society of Clinical Oncology (www.asco.org)

ARC Information on Cancer (in English and Spanish) (www.arc.com/cancernet/cancernet.html)

Cancer Genome Anatomy Project (www.ncbi.nlm.nih.gov)

Cancer Information Network (www.cancernetwork.com)

Friends in Need: A Chat Forum for Breast Cancer Awareness (www.friendsinneed.com)

Genetics of Cancer (www.cancergenetics.org)

National Comprehensive Cancer Network (www.nccn.org)

NIH CancerNet (cancernet.nci.nih.gov)

OncoLink (www.oncolink.upenn.edu)

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]

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