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In this piece, we describe how the Internet is dramatically
altering the way patients seek and obtain health information.
In a future Topic of the Month we will discuss the implications
for physicians and their relationships with patients.
The goal of patient education, whether delivered online
or through more traditional means, is to provide patients
with accurate information that addresses their individual
needs and interests, is appropriate to their educational
level, and empowers them to become more active participants
in decisions regarding their health. The Internet can
support these goals, but safeguards need to be in place
to protect patients' interests.
Types of Resources
By the end of 2000, there were more than 17,000 health-related
websites, according to the Pew Internet Project. Site
sponsors include integrated delivery systems and hospitals,
managed care organizations, health professions schools
and medical societies, government agencies, pharmaceuticals,
publishers and journals, online services, advocacy groups
and others.
Patient education resources on the Internet are divided
into two distinct categories: non-interactive and patient-interactive.
Non-interactive resources are primarily text-based,
using materials drawn from either second-hand information
from articles in journals or newsletters or original
content created for the website. Non-interactive resources
can be developed relatively easily and at low cost.
Patient-interactive resources vary in composition, but
the key component is that the patient contributes some
form of original content and receives a response immediately
or subsequently after some period of time. Examples
of patient-interactive resources include chat rooms,
bulletin boards, expert Q&A, and others forms of
multimedia. They are typically found on large-scale
health information websites along with non-interactive
resources. Some sites specialize in peer information
exchange and emotional support for people with medical
needs.
Internet Usage
As the Internet becomes more popular, more patients
are using it to look for health care information. Estimates
of the number of patients seeking web-based health information
vary. A Harris Interactive poll in March 2001 found
93 million "Cyberchondriacs" (63% of all U.S.
adults), who search for information on average three
times a month. A second report by The Pew Internet &
American Life Project published in November 2000 identified
52 million "health seekers" (55% of the Internet-user
population); 55% of these "health seekers"
say access to the Internet has improved the way they
get medical and health information. Among the health
seekers, 29% go online weekly for medical information
and 30% monthly. Everyone agrees that the number will
continue to rise.
Respondents to the Pew survey gave several reasons
why they like the Internet for health information: the
convenience of being able to seek information at any
hour; access to large amounts of information; the ability
to do research anonymously; and the ease of looking
up sensitive topics that are difficult to talk about.
Physicians also are using computers and the Internet
more over time, for a variety of purposes including
patient education. A survey by the AMA found that Internet
use grew from 20% of all physicians in 1997 to 70% in
2000. Additionally, findings from the AMA study indicate
that the percentage of online physicians who consider
the Internet as a useful resource for patient education
has increased to 39%, compared to only 25% in 1997.
Internet issues: quality and confidentiality
The health information that patients obtain on the Web
can have a profound effect on their decisions regarding
care and treatments, including whether to go to and
how to question the doctor, and how to treat an illness.
In the survey by The Pew Internet & American Life
Project, 47% of the patients who sought health information
for themselves and 36% of the patients who sought health
information for someone else (immediate family) stated
that the material affected their health care decisions.
Also 92% of all health seekers say they information
they found during their last online search was useful,
and 80% learned something new.
An important concern is the quality and accuracy of
health information on the web. Again according to the
Pew Internet Project, most health seekers are concerned
about the reliability of the information source, and
over half check to see who is providing the information.
Only 52% of those who visited health sites think that
almost all or most health information they see online
in credible. A recent study by the Rand Corporation
confirmed that most online health information is accurate,
but it's often elusive, incomplete and incomprehensible
(JAMA, May 23/30, 2001). The researchers found that
using simple search engines, such as Yahoo or Ask Jeeves,
is inefficient and the reading level of most material
is quite high. Also, only half of the topics that the
researchers thought were important for consumers were
covered more than minimally. Just over half of the sites
revealed conflicts in the information provided, e.g.,
a side effect is said to be likely and unlikely in the
same site.
High quality Internet sources should have the following
characteristics: unbiased, staffed by experts, explicit
about funding and sponsorship, clear about data of materials,
and provide references and sources. Several organizations
(including Health on the Net Foundation, American Medical
Association, Internet Healthcare Coalition, Hi-Ethics,
MedCertain) have developed criteria to guide and evaluate
the content on health-related websites. Still, there
is no national or universally accepted set of guidelines
or regulations for evaluating their quality and accuracy.
Patients must scrutinize the information they gather,
attempt to locate the quality standards regarding the
information they view, and ultimately rely upon their
physician to interpret the information.
Another concern is patient confidentiality. The Pew
Internet Project survey found that health seekers appreciate
the ability to do research anonymously, and to learn
about sensitive topics that are difficult to talk about.
So they are very anxious to have their privacy protected.
Congress has attempted to address these concerns with
the Health Insurance Portability and Accountability
Act of 1996 (HIPAA). The first set of guidance materials
is being released this summer. However, many websites
do not fit within the three categories of organizations
that are covered by the HIPAA regulations: health care
providers, insurance companies, and health data clearinghouses
(organizations that process and transmit insurance-claim
data). No clarifications regarding patient education
resources such as health assessments, applications for
clinical trials, or chat rooms have been issued yet.
For now, patients are advised to read the privacy guidelines
of the websites they visit and reply upon their own
judgement.
As more and more patients become "empowered,"
the traditional role of the physician as the primary
and sole source of information will be fundamentally
altered. Physicians will have to help patients to sort
through the information that they acquire but be sensitive
to each patient's interests and educational level. Physicians
must convey to patients that gathering information on
the Internet can be valuable but solely basing health
care decisions on such information is not prudent.
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