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Department of Health Science Education, University of Florida,
5 FLG, Gainesville, FL 32611 and
1 Department of Health Science,
University of North Florida, 4657 St Johns Bluff, Jacksonville, FL 32224, USA
| Abstract |
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| Introduction |
|---|
| Public health interest in consumer health-information seeking via the Internet |
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Magnitude of use
As the Internet has
grown, so too have health-related purposes. Perhaps most common is
consumer health-information seeking.
Internet use
The Internet's rapid
growth triggered an `information revolution of unprecedented
magnitude' [(Jadad and Gagliari, 1998
), p. 611]. The movement began with widespread diffusion
of personal computers; Internet use `exploded' in the fall of 1994
[(Breeck, 1997
), p. 1032]. Households with personal computers grew from
8% in 1984 to more than 50% by 2001 (Eng et al., 1998
; Pew Internet and American Life Project, 2001).
Although only 1000 computers were linked to the Internet in 1985, by
1998, 4 million were (Eng et al., 1998
). Recent estimates place from 90 million (The
Associated Press, 2000a
) to 120 million (Reuters, 2000
) Internet users in the US.
Consumers seeking health information
Consumer
use of the Internet for health information is large and growing; more
than 70 000 websites provide health information (Grandinetti, 2000
). Estimates of Internet health-information seeking vary
widely, but are uniformly high, evidencing `exponential' growth
[(Lacroix et al., 1994
), p. 417]. By 1997, nearly half of Internet users in
the US had sought health information [(Find/SVP, 1998
), as cited by (Eng et al., 1998
)]. Annual estimates grew from 43% in 1997 [(Find/SVP,
1998
), as cited by (Chi-Lum, 1999
)] to 63% in 2000 (Pew Internet and American Life
Project, 2001). Expressed in raw numbers, an estimated 18 million
adults in the US sought health information online in 1998 (Cyber
Dialogue, 1998
). Recent estimates range from 60 to 100 million people
doing so (Louis Harris and Associates, 1999
; Grandinetti, 2000
; Harris Interactive, 2001
; Pew Internet and American Life Project, 2001), most at
least once a month (Pew Internet and American Life Project, 2000c
).
An example illustrates the growth. When the National Library of
Medicine (NLM) made Medline available to the public via the Internet,
use exploded to more than 250 000 inquiries a day (Pathfinder, 1998
). Searches increased from 7 million in 1997 to more
than 120 million in 1998; more than one-third of the latter were
consumers (Louis Harris and Associates, 1999
). In response, NLM developed a site designed
specifically for consumers, MedlinePlus.
Reasons for the growth of consumers' online health-information
seeking include the development of participative or consumer-oriented
health care models, the growth of health information that makes
any one clinician incapable of keeping pace, cost-containment
efforts that reduce clinicians' time with patients and raise
concern about access to `best' care, emphasis on self-care and
prevention, an aging population with increased health-care needs,
and increased interest in alternative approaches to health care
(Eng et al., 1998
; Gallagher, 1999
). In addition, consumers report convenience, anonymity
and diversity of information sources as attractions (Pew Internet and
American Life Project, 2000c
).
Diverse purposes
The scope of the
health-related Internet applications is `as broad as medicine itself'
[(Sonnenberg, 1997
), p. 151]. Consumers access online health information
in three primary ways: searching directly for health information,
participating in support groups and consulting with health
professionals.
Health web pages
Consumers can access online
health information directly from credible scientific and
institutional sources (e.g. Medline, Healthfinder) as well as
unreviewed sources of unknown credibility (e.g. well-informed
individuals along with quacks and charlatans) (Gregory-Head, 1999
). The majority of consumers (77%) seeking health
information for themselves want disease information for consultation
with their physicians [(Find/SVP, 1998
), as cited by (Chi-Lum, 1999
)]; many (54%) seek information for others (Pew Internet
and American Life Project, 2000c
). Searches often are triggered by a diagnosis and
desire for treatment information (Boyer et al., 1999), as more
than 90% of health-information seekers search for material related to
physical illnesses (Pew Internet and American Life Project, 2000c
). In turn, information found may influence medical
decision making and help consumers to manage their own care (Wilkins,
1999
; Pew Internet and American Life Project, 2000c
). About 47% of those seeking health information for
themselves reported that their findings influenced treatment
decisions (Pew Internet and American Life Project, 2000c
). The most common topics are the leading causes of
death (heart disease and cancer); children's health also is a common
topic (Cyber Dialogue, 1998
).
Consumers also use the Internet to access performance reports
regarding providers and hospitals (Green 1996
; Anonymous, 1997
), and information about managed care organizations
(Williams, 1999
). Information may be used to select providers (Coile and
Howe, 1999
), identify specialists (Williams, 1999
) and make decisions regarding employment-related health
care benefits (Cronin, 1998
). In addition, the Internet may be used to complement
school health education (Roffman et al., 1997
; Cox, 1998
).
Online support groups
An estimated one in four
health-information seekers joins a support group (Anonymous, 1998
; Cyber Dialogue, 1998
). Social support groups abound offline and online for
an array of reasons (Cline, 1999
). Like face-to-face groups, online groups offer an
alternative to professional care; provide social support,
information, shared experiences and behavioral models; and empower
participants, fulfilling the functions of a community (Sharf,
1997
; King and Moreggi, 1998
; Nochi, 1998
).
One study found that users rated online support groups more
helpful than physicians in numerous ways (e.g. convenience,
emotional support, cost-effectiveness and in-depth information)
(Grandinetti, 2000
). Relative advantages of online groups are their 24-h
availability, anonymity, selectivity in responding, capacity for
immediate and time-delayed reactions, unlimited volume of
participants (including professionals), and exposure to an increased
number of opinions, expertise and experience (Sharf, 1997
; Haythornwaite et al., 1998
; King and Moreggi, 1998
). The lack of non-verbal cues and potential for anonymity
create a level playing field with regard to status (King and
Moreggi, 1998
). Because many demographic and physical differences are
obscured, a sense of `groupness' may evolve more readily.
Online interaction with health
professionals
Increasingly, consumers use the Internet to
consult with health professionals. Touted only a short time ago as a
`future development', today, many patients maintain E-mail contact
with physicians. About one in five physicians E-mail patients (Cyber
Dialogue, 2000b
) and 3.7 million patients E-mail their doctors (Cyber
Dialogue, 2000a
); however, as many as 33.6 million would like to do so.
Patients also use E-mail to interact with `cyberdocs'—interactive
virtual doctors' offices (Bader and Braude, 1998
; Oravac, 2000).
A more controversial development is fee-based psychotherapy via
E-mail. King and Moreggi contend this application may be most useful
for problems with `everyday living' [(King and Moreggi 1998
), p. 94]; disorders involving distortions of reality may
be difficult to detect. Online therapy raises ethical questions
and legal concerns (King and Moreggi, 1998
) related to diagnosis by E-mail alone (Buhle, 1996
), given the potential for misrepresentation and
deception (McLellan, 1998
), and unclear care standards (with regard to record
keeping, outcome expectations, billing and confidentiality) (Shapiro
and Schulman, 1999
).
Diverse users
Early Internet users
were likely to be white male professionals. Today's health-related
use tends to defy stereotypes and increasingly reflects the
population's composition.
Initially men tended to use the Internet more than women, but
women constituted 50% of Internet users for the first time in
1999 (Reuters, 2000
). The number of women online grew by 32% in 1999
compared to 20% among men. However, any gender difference may be
mediated by race; one study found that women make up 56% of the black
population using the Internet, compared to an even gender split among
whites (The Associated Press, 2000b
). Women, more than men, tend to prefer health sites, in
part because of care-taking roles. A Health on the Net Foundation
(HON) survey (Health on the Net Foundation, 1999a
) found that 60% of respondents using the net to locate
health information were women [see also (Pennbridge et al.,
1999
; Pew Internet and American Life Project, 2000b
)].
More whites than blacks have Internet access in the US (57 versus
43%), a gap largely a function of income (Pew Internet and American
Life Project, 2001). On a typical day, one-third of blacks with
Internet access go online compared to 56% of whites with access
(Pew Internet and American Life Project, 2000b
). However, blacks, more than whites, rely on the
Internet as an informational tool, including for health information
(45 versus 35% of Internet users) (Pew Internet and American Life
Project, 2000b
). Popularity of using the Internet for health
information among African-Americans continues to grow, with a 6%
increase over a 6-month period in 2000 (Pew Internet and American
Life Project, 2001). This popularity may reflect blacks' lesser
access to traditional health information sources.
Internet use spans generational lines. An estimated 45% of children
in the US (30 million) have Internet access (Pew Internet and
American Life Project, 2001). Izenberg and Lieberman identified
health websites specifically designed for children (Izenberg
and Lieberman, 1998
). An HON survey (Health on the Net Foundation, 1999a
) found the largest age group of health users to be baby
boomers entering middle age, with 60% of users over age 40 and
8% over age 60. Many of the latter were ill or had ill spouses.
The Pew Internet and American Life Project found only 15% of
those over ago 65 use the Internet (The Pew Internet and American
Life Project, 2001). Despite what is labeled a `gray gap' (Pew
Internet and American Life Project, 2000a
), some research promises significant value for the
elderly; a 1999 study found that Internet can be used effectively by
nursing home residents for E-mail and other access, combating the
`four plagues of institutionalized elders: loneliness, boredom,
helplessness and decline of mental skills' [(The Associated Press,
1999
), p. 2A]. Confidence in learning E-mail spread to other
aspects of residents' lives, thereby reducing depression. Major
barriers to elders' Internet use relate to economics, lack of contact
with computers and privacy concerns (Pew Internet and American Life
Project, 2000a
).
Collaborations or collisions ahead? Implications for
the health care system
Increased consumer participation in
interactive health communication is likely to influence the health
care system due to its information dissemination, health promotion,
social support and health services functions (Robinson et al.,
1998
). A PricewaterhouseCoopers (PricewaterhouseCoopers,
1999
) global survey of health industry thought leaders
yielded the expectation that the Internet will create massive changes
in health care.
However, critics disagree about the valence of consequences.
Optimists anticipate better-informed decisions by consumers,
better and more tailored treatment decisions, stronger
provider–client relationships, and increased patient compliance and
satisfaction (Ayonride, 1998; Wilkins, 1999
), resulting in better medical outcomes (Bader and
Braude, 1998
; Wilkins, 1999
) and more efficient service (PricewaterhouseCoopers,
1999
). Pessimists contend that interactive health
communication will not enhance physician–patient communication, with
physicians likely to balk at the added responsibilities (Appleby,
1999
; Baur, 2000
). Medical outcomes could be diminished by consumers who
lack technical background, interpret information incorrectly and try
inappropriate treatments (LaPerriére et al., 1998
).
Among the ways that interactive health communication is forecast
to affect health care include: replacing traditional information,
care and community resources with online information, consultations
and social support networks (Simpson, 1996
; LaPerriére et al., 1998
; Gregory-Head, 1999
; Oravec, 2000
). As consumers increasingly use the Internet to more
actively and independently manage their health care, they are likely
to take this active role into encounters with providers. One survey
found that 67% of physicians report having patients who discuss with
them information retrieved from the Internet (Neff, 1999
).
This emerging consumer role has implications for health care
relationships. Consumers may confront providers who are unprepared
to deal with the magnitude of available information (Coiera,
1996
), with patients sometimes having greater information access
than their providers. Providers may be stressed by added
responsibilities for information seeking and clarification, and
become frustrated and resistant due to time costs in correcting
inaccuracies (Ayonride, 1998; Appleby, 1999
; Lincoln and Builder, 1999
). Conflicts between provider and client may be likely
as consumers locate information that leads them to challenge,
question or `second-guess' providers, indicating diminished trust in
their physicians (Robinson et al., 1997; Bader and Braude,
1998
; Pereira and Bruera, 1998
; Eng and Gustafson, 1999
; Lamp and Howard, 1999
).
The shifting balance of informational power functions to erase
prior exclusivity of access to information (Coiera; 1996; Wilkins,
1999
), treating everyone as a `peer' [(Buhle, 1996
), p. 624]. Some applaud this shift as an opportunity
for partnerships in health care (Thomas, 1998
) and greater use of the consumer as a resource
(Wilkins, 1999
), while others see a Pandora's box of `unmanageable
problems' [(Mayer and Till, 1996
), p. 568]. Many providers are threatened by their loss
of power and fear damage to physician–patient communication
(Anonymous, 2000
). Anticipated changes highlight the need to integrate
interactive health communication into medical and health professional
curricula (Aschenbrener, 1996
; Kaufman et al., 1997
; Khonsari and Fabri, 1997
; Lunik, 1998
), continuing medical education (Doyle et al.,
1996
), and patient education and provider–client interactions,
in order to facilitate clients' access to information they trust
(Lamp and Howard, 1999
; Grandinetti, 2000
).
| Potential benefits of consumer online health-information seeking |
|---|
Widespread access to health
information
The Internet `created an avalanche of easily
accessible information' [(Appleby, 1999
), p. 21]. Exponential growth of access to health
information offers, `seemingly endless opportunities to inform,
teach, and connect professionals and patients alike' [(Silberg,
et al., 1997
), p. 1244]. Breaking the space and time barriers of
traditional information-seeking processes, the Internet offers
widespread dissemination, high volume and currency (Eng and
Gustafson, 1999
; Gregory-Head, 1999
; McKinley et al., 1999
). Theoretically available worldwide, at the price of a
local telephone call, 24 h a day (LaPerriére et al, 1998
; McKinley et al., 1999
), the Internet has the potential to increase health
information access in remote areas and to otherwise under-served
populations (LaPerriére et al., 1998
; McGrath, 1997
). As a result, the Internet offers the potential for
greater equity in access to health information (Morris et al.,
1997
). In some cases, websites are developed specifically
for otherwise hard-to-reach audiences (e.g. NetWellness, a consumer
health library, developed for a rural population) (Guard et
al., 1996
).
Interactivity
A major potential
benefit of the Internet is its capacity for interactivity,
emphasizing transactional rather than linear communication processes
(Pereria and Bruera, 1998;
McMillan, 1999
). Interactivity is reflected in complexity of choice,
responsiveness or conversationality and interpersonal communication
(McMillan, 1999
). Interactivity further promotes tailoring of messages
and facilitates interpersonal interaction.
Tailoring of information
In contrast
to traditional sources of health information (e.g. print),
interactive health communication offers the potential for more
individually tailored messages in a variety of formats (Robinson
et al., 1998
; Eng and Gustafson, 1999
). Consumers can select sites, links and specific
messages based on knowledge, educational or language level, need, and
preferences for format and learning style, often at lower cost than
conventional methods (Pereira and Bruera, 1998
). At the same time, traditional health information and
patient education materials and messages can be placed on the
Internet inexpensively (Richards, et al., 1998
).
Potential to facilitate interpersonal interaction and
social support
The Internet offers opportunities for
consumers to interact interpersonally with health professionals and
peers. Research consistently indicates that health behavior change
typically results more from interpersonal than mass communication
[e.g. (Piotrow et al., 1997
)]; thus, the Internet may be used to promote health
behavior change.
Potential for anonymity
Relative to
face-to-face interaction, interactive health communication offers
potential anonymity (Robinson et al., 1998
). Consumers may access information on sensitive topics,
and the stigmatized may interact without the predictable
disconfirmation of face-to-face interaction. Those who have
difficulty communicating face-to-face may be able to engage in
interactive health communication (LaPerriére et al., 1998
).
| Roadblocks, bumpy roads and hazards on the information super-highway |
|---|
Roadblocks to access
Claims that
`the Internet is inherently democratic' by having information for
everyone [(Wootton, 1997
), p. 576] are countered by evidence of inequitable
access. Those in greatest need are least likely to have Internet
access (Eng et al., 1998
). Have-nots include rural, isolated and traditionally
underserved populations (e.g. inner city and low socioeconomic status
neighborhoods; the elderly) (Eng and Gustafson, 1999
; Gallagher, 1999
). Barriers to online health information include cost,
geographic location, literacy, computer skills and institutional
policies (Eng et al., 1998
; LaPerriére, et al., 1998
; Gallagher, 1999
).
Disparities in access to both computers and the Internet are
growing (Chapman, 1999
). A Department of Commerce study reported that 40% of
US households have personal computers (Chapman, 1999
); however, data indicate a growing divide based on both
education and income levels. Although 82% of US households with
incomes in excess of $75 000 have Internet access, only 38% of
those with incomes below $30 000 do so (Pew Internet and American
Life Project, 2001), figures that translate to about 20 times greater
likelihood of access among the higher than the lower income group
(Chapman, 1999
). Both consumers' and professionals' (e.g. rural and
urban community health providers) access can be bounded by cost
(Martin et al., 1997
). Access is defined not simply as having a computer,
but also in terms of `affordability, accessibility, availability,
acceptability and accommodation of Internet connections' [(Wilkins,
1999
), p. 31].
Cost often correlates with geography. The worldwide picture is
dismal. Only 10% of the 55 billion US$55 spent globally on health
research addresses the needs of poor countries (World Health
Organization, 1995
). In the US, one in six people use the Internet, but in
Africa (excluding South Africa), one in 5000 uses the Internet (Lown
et al., 1998
). In Africa, Internet service providers are increasing,
but most health professionals and hospitals cannot afford hook-up and
access fees; these same countries often lack textbooks for medical
and nursing students, and have little access to medical journals
(Lown et al., 1998
). Internet access is prohibitively expensive for many
developing countries (Pereira and Bruera, 1998
). The role of poverty versus affluence in accessing the
Internet is obvious: `While the affluent travel at greater speed on
the information superhighway, a majority of the world's population
has never even made a telephone call' [(Lown et al., 1998
), p. SII36]. At the same time that analysts fear
information overload regarding HIV treatments [e.g. (Green, 1999
)], 95% of HIV cases occur in the developing world where
few doctors can access the Internet and for whom few sites exist
in local languages. Thus, little attention is paid to making
information accessible to those in greatest need.
Computer, English language and health literacy constrain Internet
use. People may not know how to access the Internet or be afraid
of the technology (Wilkins, 1999
). People unable to speak, read or understand English
are disadvantaged as English is the dominant online language (Pereira
and Bruera, 1998
). NOAH (New York Online Access to Health) was one of
the first websites developed to address consumer health information
needs in both English and Spanish (Voge, 1998
). People with the greatest health care needs often have
low information access due to lower health literacy levels (American
Medical Association, 1999
).
Eng et al. advocate universal access to health information (Eng
et al., 1998
). They challenge both public and private stakeholders
to collaborate to reduce the gap between `haves' and `have-nots',
by supporting access in homes and public places (e.g. public
libraries, schools, malls, community centers, health care facilities,
places of worship), developing applications for diverse users,
supporting access-related research, addressing quality of information
issues and training health information specialists to function
as intermediaries (Eng et al., 1998
).
Arguments for universal access are 3-fold: philosophical, public
health and economic. Philosophically, the majority of health
information was developed from publicly funded research and
should be accessible to all. The authors' views parallel the
egalitarian philosophy about public libraries, i.e. `encouraging
an informed citizenry and a vibrant democracy' [(Eng et al.,
1998
), p. 1373]. Greater access to health information may improve
health status by enhancing the quality of health-related decisions;
in turn, health care costs may be reduced.
Bumpy roads: navigational
difficulties
Internet users may find health information
functionally inaccessible due to design features resulting in
difficulty of use.
Information overload
Analysts recognize online
health information overload as a problem [e.g. (LaPerriére et
al., 1998
)], characterizing is as a `disease' [(Morris, 1998
), p. 1866] or a `traffic jam' [(McGrath, 1997
), p. 90]. Wootton likens the Internet to a vast library
in conjunction with a giant set of Yellow Pages (Wooton, 1997).
A spokesperson for the US Department of Health and Human Services
warned, `Trying to get information from the Internet is like
drinking from a firehose, and you don't even know what the source
of the water is' [(McLellan, 1998
), p. SII39]. One physician complained of `an
information glut to the point that people get all balled up'
[(Appleby, 1999
), p. 21]. The speed and uncontrolled manner of Internet
growth and information accumulation make locating valid information
more difficult (Jadad and Gagliari, 1998
).
Disorganization
Not only is the Internet
overloaded, it is disorganized (McKinley et al., 1999
). The Internet is like [(Jacobson, 1995
), pp. A29–A30]:
...a library where all the books have been donated by patrons and placed randomly on shelves. There are no call numbers or other classification schemes, and people can move books around from shelf to shelf whenever they wish. Moreover the library is expanding rapidly, with new collections arriving every day and thousands of additional people signing up every week to roam through the stacks...It is an unorganized mass of material—some of it wonderful, some of it awful.
Searching difficulties
Even Internet literate
users may not be skilled in locating health information. Searching
can be difficult both for consumers and professionals (DeGeorges,
1998
; Pereira and Bruera, 1998
). Users may find that search engines locate too many or
too few sites (Chi-Lum, 1999
); target audiences often are unspecified. Availability
of information on the web is subject to the same disparities as
traditional sources. For example, although many sites contain
HIV/AIDS information, few are designed for women (Mallory, 1997
), mirroring offline discriminating factors in attending
to the disease [see, e.g. (Cline and McKenzie, 1996
)].
Inaccessible or overly technical language
Beyond
inaccessibility to material in one's native language, users may find
much health information presented in jargon or highly technical
language. Despite their training, 48% of nurses studied indicated
that they found Internet-based health information unclear (AWHONN,
1997
). Much health information is presented at a high
reading level; overuse of textual formats may exacerbate language
problems (McGrath, 1997
). However, graphic formats pose their own problems,
often in the form of slowness in downloading graphics (McGrath,
1997
).
Lack of user friendliness
Once located, health
sites may be difficult to use due to confusing layering,
difficult-to-follow linkages and lack of searchability. Difficult to
use or weak browsers and search engine technologies may challenge
users (Pennbridge et al., 1999
). Consumers unfamiliar with the technology may be
intimidated and retreat both from the Internet and from the health
care system (Gallagher, 1999
).
Lack of permanence
The Internet is fluid rather
than permanent. Inconsistent updating means that information may be
out of date (Gallagher, 1999
). Sites disappear, change and move without warning, due
to the `evanescent' nature of the Internet [(Pereira and Bruera,
1998
), p. 62].
O'Mahoney's review of Irish health care websites summarizes
navigational difficulties (O'Mahoney, 1999
). O'Mahoney judged these sites `disappointing'
[(O'Mahoney, 1999
), p. 334] due to little dating, unspecified target
audiences, poor design, lack of E-mail contact addresses, high
readability levels, lack of interactivity, little maintenance and
being static or out of date.
Hazardous conditions
Increasingly,
medical professionals and Internet users voice concerns about the
quality of online health information [e.g. (Maugans, et
al., 1998
; McLeod, 1998
; Boyer et al., 1999)]. Concerns persist although
evidence finds more than 90% of Internet users satisfied, having
found `the information they were looking for' (Louis Harris and
Associates, 1999
) or `useful' information (Health on the Net Foundation,
1999a
; The Associated Press, 2000b
). Despite consumer satisfaction, `incorrect information
could...be life-threatening' [(Lunik, 1998
), p. 40]. Well-reasoned criticism identifies why the
information consumers find may be harmful.
Lack of peer review or regulation
`There is no
`arbiter' of truth on the Internet' [(Lunik, 1998
), p. 40], no `quality filter' [(Lacroix et al.,
1994
), p. 417]. Anyone can develop an Internet site; thus,
`the Web has become the world's largest vanity press allowing anyone
with Internet access to act as an author and publisher of material on
any subject' [(Richards et al., 1998
), p. 281]. The Internet is characterized by
uncontrolled and unmonitored publishing with little peer review
(Marra et al., 1996
; Pereira and Bruera, 1998
). Authorship can be misleading as anyone can claim medical
expertise; pages may be `official looking' and mislead consumers
into believing they are authoritative [(Pereira and Bruera,
1998
), p. 61].
A variety of types of unreviewed sources are available to consumers,
including quacks, cranks and charlatans (Gregory-Head, 1999
), leading one observer to complain, `Finding anything
means there is a huge pile of rubbish' [(Machles, 1998a
), p. 410]. Well-intentioned individuals may provide
information based on personal experience; quacks promote unproven
remedies, giving false hope and inaccurate information about
outcomes; cranks have some scientific background but are disenchanted
with traditional science; most alarming are charlatans who `engage in
fraudulent practices with the intent to deceive' [(Pereira and
Bruera, 1998
), p. 48]. Because the Internet is unregulated,
accuracy, currency and bias vary (McGrath, 1997
; Lamp and Howard, 1999
); inaccurate information is disseminated widely
(Richards et al., 1998
).
Inaccurate, misleading and dangerous
information
Typical criticisms find health information on the
Internet `bad, and even dangerous' [(McKinley et al., 1999
), p. 265], `inaccurate, erroneous, misleading, or
fraudulent' [(McLeod, 1998
), p. 1663], `incomplete, misleading and inaccurate'
[(Silberg et al., 1997
), p. 1244] and `incomplete, contradictory or based on
insufficient scientific evidence' [(Abelhard and Obst, 1999), p. 75].
Not only is information incomplete, often it is not evidence
based (Pereira and Bruera, 1998
; Pandolfini et al., 2000
). `Science and snake oil may not always look all that
different on the Net' [(Silberg et al., 1997
), p. 1244]. Dow et al. warned that `fringe,
nonscientific therapies may be touted...as valid' [(Dow et
al., 1996
), p. 152]. Thus, concern exists for both fraudulent and
unsubstantiated information on the Internet (Marra et al.,
1996
).
More experienced users of the Internet for health information
seeking are more critical of its quality than less experienced
users (Health on the Net Foundation, 1999b
). A large and growing majority (69%, up from 53% in a
May/June 1998 survey) of Internet users are concerned about quality
of online health information (Health on the Net Foundation, 1999a
).
Coiera characterizes the potential for harm due to inaccurate
online health information as an `information epidemic' [(Coiera,
1998
), p. 1469]. Although limited in quantity, evidence of
potential harm due to low-quality online information is emerging
[e.g. (Weisbord et al., 1997
)]. One study shows that more than half of health
information websites offer unreliable information (Abelhard and Obst,
1999). Researchers who assessed the reliability of websites
containing information related to home management of children with
fevers (Impicciatore et al., 1997
) found that the information on only four of 41 websites
adhered closely to the primary recommended guidelines. Similarly, a
study of online sources regarding childhood diarrhea (McClung et
al., 1998
) found only 12 of 60 articles from traditional medical
sources adhered to treatment recommendations of the American
Academy of Pediatrics, even when websites were from major academic
medical centers. A study of cancer information on the Internet
found `abundant' materials that were not peer-reviewed and a 6%
rate of inaccuracy (Biermann et al., 1999
). One study of Internet sites addressing a
urology-related topic concluded, `The number of Web sites providing
complete, nonbiased information continues to represent only a small
portion of the total' [(Sacchetti et al., 1999
), p. 1117]. Finally, an initiative by the Federal Trade
Commission identified, in only a few hours, over 400 websites and
Usenet newsgroups containing false or deceptive claims and products
for six diseases (Federal Trade Commission, 1997
).
Concerned about `sensational anecdotes', common to the Internet,
Pereira and Bruera searched sites on controversial issues (e.g.
euthanasia and medical use of marijuana) and concluded that the
majority offered `unbalanced views with little or poor referencing to
scientific data' and noted several commercial sites, particularly
those advancing alternative therapies [(Pereira and Bruera,
1998
), p. 61].
One culprit in propagating incorrect information is online support
groups (LaPerriére et al., 1998
). Given countless groups, no means exists for stopping
the dissemination of false or misleading information (King and
Moreggi, 1998
). For example, a study of a bulletin board dedicated to
discussing painful arm and hand conditions showed that one-third of
the medical information provided was classified as `unconventional'
[(Culver et al., 1997
), p. 468], commonly (79%) provided by people lacking
professional medical training. Personal experience was the basis of
61% of non-professionals' information; both professionals and
non-professionals typically failed to provide an information
source.
Not everyone contends that inaccurate information is relatively
more abundant on the Internet. McLeod reasons, `It might be
argued that the Internet suffers no more from error and inaccuracy
than do many traditional informal sources of health care information,
including acquaintances, pamphlets, and popular press articles'
[(McLeod, 1998
) p. 1663]. Although concern for quality has never been
greater, it also has never been easier to crosscheck information and
get multiple opinions or sources (Wootton, 1997
).
Likewise, not all studies regarding Internet information doubt
quality. For example, Maugans et al. identified Internet
resources for 10 common pediatric neurosurgery topics (Maugans et
al., 1998
); generally they found that information was highly accurate,
with the exception of that found in online support groups and
chat rooms. Similarly, a study of four Internet sites providing
prescription drug information found 98% or greater accuracy;
but not all sites provided information on all drugs being evaluated
(Hatfield et al., 1999
).
In summary, Internet searches may yield false and deceptive
service, product and treatment claims without providing supporting
evidence or sources permitting verification (Dow et al., 1996
). Even savvy Internet users `can have trouble
distinguishing the wheat from the chaff' [(Rudin and Littleton,
1997
), p. 934]. Sonnenberg claims `Most people will be
unable to determine the qualifications of Web authors and separate
truth from opinion' and `even well-educated users are unlikely to
have the background required to critically evaluate medical
information' [(Sonnenberg, 1997
), p. 152]. As a result, consumers lacking evaluation skills
are particularly vulnerable.
Consumers' evaluation skills
Quality concerns
include the public's ability to select valid information (Pereira and
Bruera, 1998
; Abelhard and Obst, 1999). Sonnenberg questions whether
consumers `can make good selections when more than one site is
available to address their concerns' [(Sonnenberg, 1997
), p. 151].
`In medicine, the ability to review scientific literature critically,
to identify major research flaws, and to interpret correctly
the clinical implications of research findings, are skills acquired
through training' [(Ayonrinde, 1998
), p. 449]. Consumers may misjudge information, become
information-overloaded and thereby easily confused, misinformed or
misled. Without skills needed to discern validity and familiarity
with the scientific review process (Pereira and Bruera, 1998
), consumers may: (1) fail to recognize that key
information is missing [e.g. (Sacchetti, et al., 1999
)], (2) fail to distinguish between biased and unbiased
information (Sachetti et al., 1999), (3) fail to distinguish
between evidence-based and non-evidenced-based claims (Ayonride,
1998), and (4) misunderstand health information intended for
health professionals (Ayonride, 1998). These limitations are
particularly salient given evidence that people may give greater
credibility to information from computers than from other media
(Hawkins et al., 1987
; Bader and Braude, 1998
; Rudin and Littleton, 1997
).
Risk-promoting messages abound
The Internet is a
reservoir of potentially influential risk-promoting as well as health
information and messages. For example, the Internet is a source of
information about suicide methods (Alao et al., 1999
). Some evidence indicates that Internet use may promote
sexual risk taking. A recent survey of youth (ages 10–17 years) found
that, among those who used the Internet regularly, 19% were the
targets of unwanted sexual solicitation on the previous year,
resulting in high levels of distress among 25% of those solicited
(Mitchell et al., 2001
). Further, people who choose to use the Internet to
find real-life sex partners are more likely to contract sexually
transmitted diseases or to engage in risky behavior (e.g. have anal
sex, more partners or partners known to be HIV-positive) than those
who become acquainted offline (McFarlane et al., 2000
). Toomey and Rothenberg criticized the public health
establishment for failing to anticipate this Internet consequence, a
foreseeable result of the anonymity of sex facilitated by the
Internet [(Toomey and Rothenberg, 2000
), p. 486]: `For populations with levels of education and
income sufficient to support computer use, the Internet has
become an efficient facilitator of behaviors and practices that
have been taking place for many years among certain high-risk
individuals'. Thus, the Internet represents new challenges to
public health professionals.
Potential for online pathologies and maladaptive
behaviors
Among hazards of interactive health communication are
the potentials for Internet addiction, validation of serious
psychiatric disorders as `normal', disinhibition and the replacement
of face-to-face interaction with computer-based interaction. Grohol
forecasts pathologies or maladaptive behaviors related to online
participation including over-use and related relational and social
problems (Grohol, 1998
).
Estimates of Internet addiction run as high as 2–3%; however,
research is sparse (Griffiths, 1998
). Young reports that the concept of Internet addiction,
first introduced in 1996, sparked controversy for two reasons (Young,
1999
). Some believed only physical substances could be
addictive; others resisted because of the many positive consequences
of the Internet. No accepted diagnostic criteria exist. Young defines
Internet addiction as pathological Internet use, an impulse-control
disorder (Young, 1999
). Negative consequences include disrupted sleep patterns,
fatigue, lack of exercise, familial and occupational impairment,
and relational, academic and occupational problems (Young, 1999
). Griffiths raises questions for future research,
including addressing to what, and why, people are addicted
(Griffiths, 1998
).
The Internet may offer reinforcement and validation of normalcy to
people with psychiatric disorders, with the potential to facilitate,
promote and further disseminate such disorders. For example, Elliott
reports the case of `apotemnophilia', a psychosexual disorder
involving the desire to be an amputee (Elliot, 2000). Although little
research has been published in medical journals, and few
psychiatrists and psychologists have ever heard of the term, numerous
websites are devoted to the problem, such that Elliott characterizes
interest on the Internet as `enough...to support a minor industry'
[(Elliot, 2000), p. 72]. The author found one listserv with 1400
subscribers. Participants on the Internet who have a sexual
attraction to amputees are known as `devotees', while those with the
actual desire are termed `wannabes.' Websites sell photographs
and videos of amputees and offer interpersonal access via chat
rooms and bulletin boards, where discussions topics include
black-market amputations and methods of performing amputations (e.g.
gunshot wounds, chainsaw slips) (Elliott, 2000
). Elliott observed that many participants seemed to
have other psychiatric disorders.
Schnarch expresses concern that the Internet encourages simplistic
approaches to relationship development and intimacy (Schnarch,
1997
). These include dependence on the validation of others
based on self-presentation rather than core self-disclosure,
dependence on other-validation rather than self-validation and
substituting self-presentation for self-confrontation. Schnarch
warns that the Internet affords no opportunity to confront partners
with contradictions between self-presentation and observed behavior
(Schnarch, 1997
). Online relationships often are attributed high levels
of intimacy, likely based on the disinhibiting effects of interacting
via media and the lack of non-verbal cues. Disinhibition is
characterized by the apparent reduced concern for self-presentation
and the judgments of others (Joinson, 1998
). Whether online interaction promotes greater
relational honesty or deception remains unanswered. Grohol concludes
that going online may simply make existing pathologies more evident
(e.g. antisocial and manipulative behaviors) (Grohol, 1998
).
| Evaluating health information on the Internet |
|---|
Criteria for evaluating health information
websites
Numerous authors bemoan the difficulty and
limitations of establishing quality standards [e.g. (McLeod, 1998
)], yet a review of literature yields substantial
consensus regarding such criteria. Health-related websites should be
judged by the quality of health information found on them and
by design features that may facilitate or impede use. Quality should
be based on a comprehensive assessment rather than any single
criterion. A readily navigable or updated site may contain inaccurate
information (Ambre et al., 1997
; McLeod, 1998
; Rippen, 1999
).
Quality of health information
Quality of health
information found on the Internet should be subjected to the same
standards as traditional information, including source and message
characteristics, as well as adaptability to targeted audiences.
Internet sources include both site sponsors and sources of
specific information. Credible Internet sources mirror tradition,
including journals, universities and recognized research centers,
libraries, government agencies, and professional organizations
(Silberg et al., 1997
; Lamp and Howard, 1999
). However, health information may be found on sites
sponsored by little known but credible organizations (e.g.
organizations of providers, consumer advocacy groups, voluntary
health-related organizations), as well as organizations whose names
only sound credible, commercial sponsors, and individuals
(both professionals and members of the public). Credibility
constitutes the `premier criterion' for evaluating online health
information [(Rippen, 1999
), p. 4]. Credibility is defined as in terms of
judgments regarding believability of sources of messages, reflected
in two dimensions: authoritativeness and
trustworthiness (O'Keefe, 1990
).
Authoritativeness (also termed competence or expertise) involves
judgments of whether the source is in a position to know what
is truthful or correct (O'Keefe, 1990
). Consumers should seek evidenced-based information and
advice from expert sources (Wyatt, 1997
; Appleby, 1999
). Typically, physicians and health care organizations
are perceived as authoritative (Ambre et al., 1997
); however, those associated with medical schools are deemed
more credible by their research involvement. Evidence of
authoritativeness includes:
Trustworthiness refers to judgments regarding the character
or integrity of a source in terms of motivation to be truthful
(O'Keefe, 1990
). Even authoritative sources may be biased (Ambre et
al., 1997
; Wyatt, 1997
). Evidence to assess trustworthiness includes:
Message characteristics
Internet content or
information may be judged as `messages', subject to the same
evaluation standards as traditional print sources (Garrison, 1998
). Evidence of valid messages includes:
Audience characteristics
A site's audience and
context should be identified clearly and the site adapted
accordingly. Audience refers to targeted users (e.g. consumers or
health professionals), while context refers to a site's topic and
intended uses (e.g. informational, advisory, commercial) (Adelhard
and Obst, 1999
). A site's appropriateness, relevance and usefulness
should be readily discernable; content and design should match
targeted audiences (e.g. reading and language levels) and contexts
(Adelhard and Obst, 1999
).
Design features
Format
characteristics may enhance delivery of information, but do not
affect the quality of message content (Ambre et al., 1997
). Design features vary widely, making sites more or less
facilitative when seeking particular information or locating
specific sites. Facilitative design features include:
Mechanisms for evaluating
websites
Access to peer-reviewed resources, user surveys and
codes of conduct may facilitate consumers' task of evaluating
online health information.
Peer review
Unlike medical literature, much
online health information lacks peer review (Ambre et al.,
1997
; Rippen, 1999
). However, informed consumers increasingly can access
peer-reviewed health information (via sites that provide abstracts
and full-text journal articles, often with extensive archives), e.g.
consumers' access to Medline equals that of professionals. Beyond
scientific research articles, consumers can access websites developed
specifically to assure high quality evidenced-based information (e.g.
Healthfinder, MedlinePlus) to search for information or verify that
found elsewhere (Wootton, 1997
).
Rating systems
Few websites feature user-rating
systems (Ambre et al., 1997
). Some post unofficial reviews, ratings and standards
for evaluating sites (Essex, 1999
). For example, Quackwatch.com was designed to combat
health-related fraud both on- and offline (Barrett, 2001
). A review of `best' attempts to develop systematic rating
systems questioned both their validity and benefits, and concluded
they may do more harm than good. (Jadad and Gagliari, 1998
). As Berland et al. point out, when sites or
systems rely on voluntary self-assessments, reliability and validity
are unknown (Berland et al., 2001
). Numerous organizations offer criteria for assessing
websites [e.g. (Eng and Gustafson, 1999
)], but such assessments are for personal use rather
than formal site evaluation.
HON code of conduct
At present, the most
widespread attempt to apply a code of conduct to online health
information was developed by HON. HON is a self-governing body
promoting eight ethical standards for online health information
online: (1) advice provided by qualified professionals, unless
otherwise indicated, (2) support versus replace existing
provider–client relationships, (3) confidentiality of user data, (4)
clear referencing with links to sources where possible, and dates of
modification noted, (5) balanced evidence for claims, (6) information
clear, with contact addresses to facilitate clarification, (7)
sources of funding indicated clearly, and (8) any advertising (as
funding) acknowledged and clearly differentiated from the site's
content (Boyer et al., 1998
). Websites that comply with the HON code contain the
HON logo (Health on the Net Foundation, 1997
; Boyer, et al., 1998
). As of January 2000, HON registered connections to its
code from more than 5000 external servers and more than 20 000
external web pages (Health on the Net Foundation, 2000
). However, HON encourages use of their verification
system to determine if sites are bona fide HON subscribers
(versus simply displaying the logo) (Health on the Net Foundation,
2000
).
In summary, increasing quality concerns mandate evaluation standards. Despite relative consensus on evaluation criteria, they have not been widely disseminated to the public nor are they a fail-safe method for assuring quality.
| Research and the Internet as a source of health information: the vast wasteland or the new frontier? |
|---|
Just 5 years ago, journal articles commonly explained what the
Internet is to health professionals [e.g. (Guay, 1994
; Dow et al., 1996
; Huang and Alessi, 1996
)]. Much early writing (1993–1996) simply defined key
terms, explained use and projected impact on a profession [e.g.
(McKinney and Bunton, 1993
; Frisse et al., 1994
; Tomaiuolo, 1995
; Steiner et al., 1996
; Weiler, 1996
)]. Even more recently, numerous articles explain the
Internet and summarize basic use [e.g. (Gagel, 1998
; Littleton, 1998
; Lunik, 1998
; Machles, 1998a
,b
)]. Many articles address best sites, in general [e.g.
(Judkins, 1996
)], or based on profession, specialization or disease or
disorder [e.g. (Korn, 1998
; Bell, 1999
; Mann, 1999
)], including articles for consumers [e.g. (Stemmer-Frumento,
1998
; Tomlin, 1998
)].
Second-generation health-related Internet uses go beyond disseminating
information. Numerous authors project what the Internet will
offer consumers in the future; often reality is not far behind.
Only a few years ago, authors `predicted innovations' now in
practice, such as hospital telephone directories online, patients
searching for information about upcoming surgical procedures,
newly diagnosed patients using the web for patient education
(Doyle et al., 1996
), E-mailing physicians (Bazzoli, 1999) and cyberspace
visits replacing live visits (e.g. for prison populations, in rural
areas) (Keen, 1997
). The rate of Internet development quickly renders
projections out of date, blurring a sense of present and future. Some
`projections' include: hospital online nurseries to allow friends and
family to see newborns (Bazzoli, 1999), physicians using the Internet
for patients to review diagnostic information on depression in order
to convince the patient of the diagnosis and printing this
information as a fact sheet (Stevens, 1998
), providers creating customized pages to meet patients'
specific needs (Flory, 1998
; Stevens, 1998
), and patients storing electrocardiogram records on
secret web pages for emergency access (Doyle et al., 1996
).
| Directions for future research: challenges and opportunities |
|---|
Abelhard and Obst, in grappling with research challenges, indicate
that new methods may be required with regard to sampling (as
users may vary with amount of use, expertise, nature of use)
(Abelhard and Obst, 1999). Researchers will be challenged to
discriminate effects due to the Internet versus other highly
accessible health-information sources (e.g. television,
direct-to-consumer prescription drug advertising). Controlled studies
may include longitudinal investigations (as use and influence may
vary over time), retrospective cohort studies and case control
studies, as alternatives to traditional studies using control
groups (Adelhard and Obst, 1999
).
In response to now-common criticisms and concerns regarding
health-information seeking on the Internet, future research
needs to assess the `net gap' as well as the quality of information
(message content). Research needs to address the demographic
characteristics of participants, to more precisely identify the
underserved, as well as the kinds of information consumers are
seeking, what they locate, how they judge the quality of information
found, what they learn (Wyatt, 1997
) and how they are influenced behaviorally. Researchers
need to compare the processes, outcomes and cost-effectiveness of
traditional versus online health-information seeking, as well as
various types of online information seeking (e.g. direct searching
compared to interactions with support groups or professionals).
Future research, practice and public policy need to focus on
reducing the `net gap' both in terms of accessibility and
evaluation skills.
Despite abundant speculation regarding the consequences of consumer
participation in interactive health communication, little research
has investigated these issues; a lack of compelling evidence
exists regarding relative effectiveness; perhaps more
importantly, little evidence exists regarding effects. Critics
bemoan absence of research regarding the Internet's
effectiveness [e.g. (Eng and Gustafson, 1999
)]. However, assessing effectiveness presumes a
consensus regarding websites' goals and objectives. Public health
professionals' goals involve enhancing health knowledge, beliefs and
behavior. However, taken collectively, health websites do not reflect
a monolithic objective; some are created for profit, others for
personal benefit and still others to `validate' views that lack an
evidence base. Thus, from the perspective of their creators, some
websites may be deemed effective if they are commercially successful,
personally confirming, or succeed in disseminating information and
gathering support for riskpromoting or unhealthy functions. Moreover,
given the potential for health websites to `promote disease' as well
as health and to disseminate fiction as well as fact (including those
designed for health-promotion goals), researchers may do well to
think in terms of assessing `effects' rather than
`effectiveness.'
Ultimately interest and research on effects should focus on
quality of health and health care. Despite observers' contentions,
little research has assessed the impact of interactive health
communication on the health care system (Wyatt, 1997
; Abelhard and Obst, 1999), although health care
(Sonnenberg, 1997
), health care interaction, and health and medical
outcomes (Adelhard and Obst, 1999
) likely are affected.
This article begins by defining health information seeking on the Internet in terms of `interactive health communication' and focuses on the information seeking function. That terminology, and this review, suggest a conceptual framework for future research and practice: we may improve our understanding, investigation, and ability to influence processes of health information seeking on the Internet by framing them as communication processes rather than information dissemination or educational processes. Much of the literature reviewed here focuses on the Internet as a high-tech conveyor in the rapid diffusion of information or health lessons. However, to do so is to ignore the very nature of the Internet. Compared to traditional planned information dissemination phenomena, the Internet reflects a paradigm shift by offering interactivity and reciprocal influence, pointing toward transactional rather than one-way processes, and blending interpersonal and mass communication processes. Framing Internet use as health communication invites social systems and social influence theoretical frameworks. These frameworks suggest additional avenues for research.
The present review clarifies the interdependence of the Internet with other components of health communication systems, including health care, health promotion, risk-inducing communication, and the roles of everyday interpersonal communication and mass media in health. Understanding the opportunities and influences posed by the Internet as one component of the larger health communication system offers directions for research as well as practice. For example, research needs to address (1) the impact of interactive health communication on the physician–patient relationship, as well as how health care providers might influence consumers' use of the Internet, (2) the implications of the Internet for the larger health care system, including medical outcomes and health care costs, and (3) how the Internet influences and is influenced by a managed care environment.
To view Internet use as a communication process activating social
influence suggests shifting focus from information to messages
and meanings. Although the issue of quality of health information
is significant, understanding the Internet's impact (both positively
and negatively) defies simply considering information and its
accuracy. How and why Internet use validates and promotes functional
as well as dysfunctional outcomes (e.g. desire to be an amputee)
may be understood in terms of types of messages shared and meanings
invoked by those messages for participants. Interpersonal
communication concepts, such as empathy, confirmation, validation,
self-disclosure and immediacy, shift attention from the content of
messages (information) to their meta-communicative functions
(Wilmot, 1980
), including sustaining identities and relationships (i.e.
matters of social influence). [For further discussion, see (Lewis,
1994
; Cline, 2002
).] Concepts traditionally employed for understanding
planned change messages and campaigns may also illuminate the
dynamics and effects of interactive health communication (e.g.
audience analysis and segmentation, credibility, homophily,
message design, language personalness and intensity, affect,
metaphor, one- versus two-sided messages, central versus peripheral
message cues and processing, message sequencing, evidence, exposure,
tailoring, and an array of persuasion strategies). [See, e.g.
(Maibach and Parrott, 1995
; Rice and Atkin, 2001).]
The challenge to public health practice is to facilitate
health-promoting use of the web among consumers in conjunction with
their health care providers. Meeting that challenge requires
developing discerning and critical usership among consumers,
persuading health care professionals of the importance of
collaborating in that facilitation and use, and providing both
parties with the strategies, skills, programs, and systems to do so.
Meeting that public health challenge requires an evidence base that
matches the nature of the phenomenon. Thus, we join Deering in
calling for research on the `optimum' use of the web for
communicating about health and medicine, particularly research with
an emphasis on communication [(Deering, 1998
), p. 136].
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