Author Affiliations: Pediatric Emergency Fellow, Montreal Children's Hospital, McGill University, Montreal, Quebec, (Dr Crocco); Clinical Epidemiology Unit at Pediatric Hospital, Instituto Mexicano del Seguro Social, Mexico City (Dr Villasis-Keever); Centre for Global eHealth Innovation, Departments of Health Policy, Management and Evaluation, and Anaesthesia, University Health Network and University of Toronto, Toronto, Ontario (Dr Jadad).
Context There is concern about the potential harm associated with the use of
poor quality health information on the Internet. To date, there have been
no systematic attempts to examine reported cases of such harm.
Methods We conducted a systematic review of the peer-reviewed literature, to
evaluate the number and characteristics of reported cases of harm associated
with the use of health information obtained on the Internet. Using a refined
strategy, we searched MEDLINE (from 1966 to February 2001), CINAHL (from 1982
to March 2001), HealthStar (from 1975 to December 2000), PsycINFO (from 1967
to March 2001), and EMBASE (from 1980 to March 2001). This was complemented
with searches of reference lists. Two authors separately reviewed the abstracts
to identify articles that describe at least 1 case of harm associated with
the use of health information found on the Internet. Articles of any format
and in any language deemed possibly relevant by either researcher were obtained
and reviewed by both researchers.
Results The search yielded 1512 abstracts. Of these 186 papers were reviewed
in full text. Of these, 3 articles satisfied the selection criteria. One article
described 2 cases in which improper Internet searches led to emotional harm.
The second article described dogs being poisoned because of misinformation
obtained on the Internet. The third article described hepatorenal failure
in an oncology patient who obtained misinformation about the use of medication
on the Internet.
Conclusions Despite the popularity of publications warning of the potential harm
associated with using health information from the Internet, our search found
few reported cases of harm. This may be due to an actual low risk for harm
associated with the use of information available on the Internet, to underreporting
of cases, or to bias.
The Internet has spawned a plethora of publications warning of potential
harm, particularly regarding the inappropriate use of the Internet by patients
and families. Potential risks can emanate from the use of irrelevant or inaccurate
information1,2 or from misunderstanding
relevant and valid information.3 In these cases,
harm can be physical (eg, due to inappropriate treatments, adverse effects,
or untreated disease), emotional (eg, from false hope or anxiety regarding
unfounded diagnostic, prognostic, or therapeutic information), or financial
(eg, expenses associated with unnecessary second opinions and purchase of
inappropriate services or products).
Our objective was to conduct a systematic review to examine the number
and characteristics of cases of harm associated with the use of health information
available on the Internet.
A refined strategy that combined 2 sets of terms was used. One set related
to the Internet and the other related to harm (Online Table available in PDF format ). The databases
searched with this strategy included MEDLINE (from 1966 to February 2001),
CINAHL (from 1982 to March 2001), HealthStar (from 1975 to December 2000),
PsycINFO (from 1967 to March 2001), and EMBASE (from 1980 to March 2001).
Searches were executed in April 2001 and were complemented with a review of
the reference lists of relevant articles.
All citations were evaluated for eligibility independently by 2 of the
authors (A.G.C., M.V.-K.). Disagreements were resolved by consensus or by
the third author (A.R.J.). A citation was included if it described at least
1 case of harm associated with the use of health-related information found
on the Internet. All publication types, in any language, were included. Harm was defined as adverse events or bad outcomes, either
physical or emotional, that occurred after the use of materials, medications,
and/or information obtained from a Web site. Publications were excluded if
they described harm associated with use of e-mail or if they described cases
of intentional harm.
The same authors who participated in study selection extracted data,
from each article, on name of the first author, publication type, publication
year and journal; number of individuals studied, age, health status; type
of information obtained from the Internet; type, severity, duration, management,
and outcome of harm; and suggested mechanism of harm. The data extracted were
summarized in tables and described qualitatively. Meta-analysis of a small
number of case reports was deemed inappropriate.
The search strategy yielded 1512 citations of indexed journal articles.
Of these, 186 full articles were retrieved, of which only 3 articles met the
inclusion criteria. Of the articles excluded, 11 described intentional self-inflicted
harm (the list is available on request).
One of the included articles described 2 cases of emotional distress
after inappropriate Internet search strategies led to irrelevant information.4 The first case described a pregnant woman and her
partner, who after being informed that the fetus had borderline cerebral ventriculomegaly
searched the Internet for information on hydrocephalus, a word they remembered
from their medical visit. The information they found was related to aqueduct
stenosis. Based on the irrelevant information they found on the Internet,
the family made arrangements to have a postnatal shunt placed by a pediatric
neurosurgeon. The family required several counseling sessions to deal with
the anxiety caused by their failed attempts to find information. The second
case described a patient who presented for termination of a pregnancy. She
had been told that her fetus had a 7-mm nuchal fold, and she subsequently
performed an Internet search using the wrong keywords. She found information
on fetal cystic hygroma. Believing this was the fetal diagnosis, she sought
termination of the pregnancy. The authors did not include outcome information
for this case.
Two articles described physical harm. In the first report, the authors
described phenol poisoning in 3 dogs. Their owner had used erroneous information
about the use of phenol for heartworm. The 3 dogs required intensive care
intervention, and all 3 recovered.5
The only reported case of unintentional physical harm in humans involved
a 55-year-old man with squamous-cell carcinoma of the sinus who found information
on the Internet that promoted the use of hydrazine sulphate for cancer treatment.
After self-medicating for 4 months with hydrazine that he had obtained from
an alternative medicine Web site, he presented with hepatorenal failure. He
died a week later. The autopsy findings suggested an adverse reaction from
use of hydrazine sulfate, which is an unregulated alternative remedy for cancer
marketed on the Internet.6
The Internet's capacity for harm is likely to be equal to or exceeded
by its capacity for providing good and useful health information to users
in a relatively inexpensive and timely manner. Better data on both harms and
benefits associated with the use of the Internet around health-related decisions
are needed as is more valid information about the accessibility of such information
by members of the public.7
The dearth of information on harm associated with the Internet is unfortunate
but not unexpected. It has been known for a while that peer-reviewed literature
provides a gross underestimate of harm associated with health-related interventions
because authors tend to concentrate on efficacy and effectiveness rather than
on harm. In this case, the lack of information about harm related to the Internet
may be explained by several reasons. First, it is possible, albeit unlikely,
that a low risk for harm associated with the use of health information from
the Internet exists. Finding health-related information is different from
using it. Patients may also be more discerning and Internet savvy than what
experts may be willing to credit them for evaluating for themselves the quality
of the information that they find before acting on this information.
Second, it is possible and plausible that many cases of harm associated
with inappropriate use of health information on the Internet have occurred
but remain unreported. People harmed after using information found on the
Internet may feel a sense of guilt or intimidation at having ventured outside
the confines of the relationship with their caregivers.
Third, it is possible that health care professionals do not think about
the role that the Internet may play in relation to adverse events experienced
by their patients. They may also feel intimidated by assertive patients and
become reluctant to ask about their Internet use.
Fourth, health care professionals may be aware of harm resulting from
their patients' inappropriate use of information from the Internet but may
not be submitting these cases for publication. Fifth, these cases may be published
but only as a subsidiary feature of other stories, hindering attempts to find
them. Lastly, it is possible that more cases of harm have been submitted for
publication but were not accepted by journal editors. These kinds of case
reports may not be considered newsworthy, or alternatively, they fail to succeed
when competing with other articles for the limited space available in most
indexed journals. If the latter were correct; however, it would be difficult
to explain the abundance of opinion pieces about potential, not actual, harm
associated with the use of the Internet. All these issues, obviously, are
likely to apply to any other source of health information.
However, gaining a valid assessment of the potential for harm associated
with the Internet and its relative magnitude in relation to other media will
not be an easy task. Strategies that may appear simple, such as the inclusion
of questions about Internet use (or other sources of information, for that
matter) during history taking, may prove difficult to implement and monitor.
Making the public more comfortable disclosing their use of information from
the Internet in cases of harm may be as difficult as getting health professionals
to acknowledge their errors. Journal editors may not have enough interest
or incentives to invest resources on efforts to increase reporting cases of
harm associated with Internet use. Even if not interested, they may consider
declaring a moratorium on more opinion pieces about such harm.
The Internet itself may prove to be the most effective source of information
about harm associated with its use and the most efficient vehicle to disseminate
it. We hope that a systematic review of information available on the Internet
be conducted soon. Recently DAERI (Database of Adverse Events Related to the
Internet), a European initiative, has been launched to promote the systematic
collection of case studies on possible harm caused by the Internet.8 We encourage readers to support this project. It is
efforts like this that may provide the only efficient and effective way to
determine whether the issue of harm associated with the Internet is just much
ado about nothing or a serious matter for concern.
Crocco AG, Villasis-Keever M, Jadad AR. Analysis of Cases of Harm Associated With Use of Health Information on the Internet. JAMA. 2002;287(21):2869-2871. doi:10.1001/jama.287.21.2869