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Berland GK, Elliott MN, Morales LS, et al. Health Information on the Internet: Accessibility, Quality, and Readability in English and Spanish. JAMA. 2001;285(20):2612–2621. doi:10.1001/jama.285.20.2612
Context Despite the substantial amount of health-related information available
on the Internet, little is known about the accessibility, quality, and reading
grade level of that health information.
Objective To evaluate health information on breast cancer, depression, obesity,
and childhood asthma available through English- and Spanish-language search
engines and Web sites.
Design and Setting Three unique studies were performed from July 2000 through December
2000. Accessibility of 14 search engines was assessed using a structured search
experiment. Quality of 25 health Web sites and content provided by 1 search
engine was evaluated by 34 physicians using structured implicit review (interrater
reliability >0.90). The reading grade level of text selected for structured
implicit review was established using the Fry Readability Graph method.
Main Outcome Measures For the accessibility study, proportion of links leading to relevant
content; for quality, coverage and accuracy of key clinical elements; and
grade level reading formulas.
Results Less than one quarter of the search engine's first pages of links led
to relevant content (20% of English and 12% of Spanish). On average, 45% of
the clinical elements on English- and 22% on Spanish-language Web sites were
more than minimally covered and completely accurate and 24% of the clinical
elements on English- and 53% on Spanish-language Web sites were not covered
at all. All English and 86% of Spanish Web sites required high school level
or greater reading ability.
Conclusion Accessing health information using search engines and simple search
terms is not efficient. Coverage of key information on English- and Spanish-language
Web sites is poor and inconsistent, although the accuracy of the information
provided is generally good. High reading levels are required to comprehend
Web-based health information.
The Internet is an increasingly important source of health-related information
for consumers. One recent survey estimated that more than 60 million US residents
went online in search of health information in the past year.1
The online population is becoming more representative of the larger US population
in terms of race, age, income, and educational attainment.2
Among those who use the Internet, more than 70% report the health information
they find influences a decision about treatment.1
The ability to obtain accurate medical information quickly, conveniently,
and privately online presents to consumers an opportunity for better-informed
decision making and greater participation in care.3
Little is known, however, about whether the available material is sufficiently
complete and accurate to support consumer decision making. Several studies
of single medical conditions have suggested deficiencies in the quality of
Web-based health information.4-11
Several organizations have developed criteria to guide and evaluate
health-related Web site content (eg, HON Code, American Medical Association,
Internet HealthCare Coalition, Hi-Ethics, MedCertain),12-18
but these criteria have not been systematically applied to a broad set of
Web pages and conditions. Furthermore, because many of these systems rely
on voluntary self-assessments by Web page developers, the reliability and
validity of many of these evaluations is unknown.19,20
Even if online materials are comprehensive and accurate, the ability
of users to apply these assessment tools depends on their ability to locate
and understand those materials. The Internet has the potential to eliminate
barriers in access to information for patients, but only if online material
can be read and understood by many different types of users.21,22
Preliminary data from the 2000 US Census indicate that the population
is becoming increasingly diverse. Since 1990, the US Hispanic population has
grown from 22.3 million to 35.3 million, making Hispanics the largest minority
group in the United States.23 Among immigrant
Hispanics, more than 98% report speaking primarily Spanish at home.24 While accessible and high-quality health information
on the Internet is important for English speakers, it could be even more useful
for Spanish speakers, who face greater barriers to traditional sources of
medical care and information.25,26
We are unaware of any studies that have evaluated Spanish-language materials.
We conducted a large cross-sectional study to describe and evaluate
health information on the Internet in English and Spanish. We evaluated information
that we found using search engines and by visiting health-related Web sites
on 4 medical conditions: breast cancer, childhood asthma, depression, and
obesity. We asked 4 main questions: What are consumers likely to find when
they search online about these conditions? How comprehensive is the information?
How accurate is it? At what grade reading level is the material presented?
We conducted 3 studies to assess the accessibility of relevant content;
the quality of health information; and the reading grade level of text. Each
study used different methods to assess the same 4 conditions. Conditions were
selected by project staff based on prevalence, clinical significance, and
diversity of the affected populations.27-41
Each study was conducted independently in English and Spanish.
Selecting Search Engines. Search engines are designed to help people locate information on the
Internet. To assess how well search engines perform this function, we selected
10 English-language and 4 Spanish-language search engines. Three of the English-language
and 2 of the Spanish-language search engines were chosen based on popularity
(defined as the number of unique visitors per month as reported by Media Metrix,
Inc in June 200042). The remaining 9 search
engines were selected because they featured unique methods of ranking Web
sites.43 Examples of ranking methods included
ranking by location and frequency of key words within a site; ranking by the
number of times a site is linked to by another site; ranking by payment from
sites; and ranking by human editing.43,44
Conducting Standardized Searches. Trained searchers entered the 4 search terms ("breast cancer," "childhood
asthma," "depression," and "obesity") into each of the 14 search engines.
All links on the first electronic page for each search engine were then counted
and classified. Links were classified as relevant if the search term or 1
of 30 to 40 related key terms per condition (eg, tamoxifen, inhaler, gastric
bypass surgery, St John's wort) was present in the link itself or the surrounding
Searchers then followed a sample of relevant links to determine whether
they led to relevant content. One sample was the first 5 relevant links on
the search results page. All remaining links were enumerated and divided into
5 strata of equal size; 1 relevant link from each stratum was selected randomly.
Searchers clicked on selected relevant links until they reached a Web page
with content (defined as when 50% of the space occupied contained text that
was not primarily an index of the site). If the first relevant link led to
a content page, the page was saved for further analysis. If the first link
led to more links, the searcher randomly selected a relevant link from the
first 15 relevant links on that Web page. If searchers had not reached a content
page after 10 cycles, the search was discontinued.
Characterizing Content. Using a standardized form, trained coders first classified Web page
content by relevance. Web pages were coded as relevant if they contained any
materials related to the 4 search terms or the 30 to 40 key terms related
to each condition. Coders then assessed the relevant pages for the presence
of promotional content (defined as material designed to encourage site visitors
to purchase products or services or participate in research programs sponsored
by the site). Explicit advertisements were classified separately from promotional
material and had to be located in a banner or sidebar on the Web page.
Selecting Web Sites. Eighteen unique English-language health Web sites (6 general health,
12 condition-specific) and 7 unique Spanish-language Web sites (3 general
health, 4 condition-specific) were selected for this study (Table 1). We selected 6 English-language general health Web sites
that were ranked highly in 2 widely used Internet industry reports, Cyber
Dialogue and PC Data Online for September 2000.45,46
Content provided by one of the most popular search engines was also included.42 Condition-specific English-language Web sites and
all Spanish-language Web sites were selected by project staff to represent
prominent examples of condition-specific Web sites from commercial, government,
and nonprofit educational organizations. Project staff limited Web sites to
those not requiring subscriptions or payments.
Developing Condition-Related Topics and Questions.
Panels of 3 to 4 nationally recognized clinical experts and representatives
from patient advocacy organizations identified 5 to 8 key clinical topic areas
for each condition (26 in all). Panelists were recruited for their clinical
or scientific experience, familiarity with national guidelines, current research,
or national reputations in the medical conditions of interest. No panelist
had consulted for, or had any financial involvement with, any e-health Web
site. Panelists were asked to identify topics that were relevant to patients,
their families, or laypersons seeking information on the study conditions.
Panelists also considered whether it was reasonable to expect to find this
information on the Web. The panels then wrote 36 consumer-oriented questions
relating to the 26 topics.
For example, the topic "breast cancer screening" was characterized by
the following questions: "No one in my family has had breast cancer. Do I
still need breast exams and mammograms? When should I start having regular
mammograms? Do I need one every year?" A complete list of all condition-related
topics and questions is located
in Online Table 1 available in PDF format.
Development of Clinical Elements. To enhance the consistency of the structured implicit review, the 4
clinical panels each developed a series of 1 to 8 clinical elements for each
of the questions based on evidence-based guidelines and materials from selected
For example, for the topic of breast cancer screening, 4 clinical elements
were developed. These included the following: women older than 50 years should
have mammograms every 1 to 2 years; early detection of breast cancer improves
outcomes; most breast cancers occur in women without a family history of the
disease; and a lack of consensus exists about the need for or appropriate
interval of mammography in women from age 40 to 49 years. A total of 100 clinical
elements were developed
(Online Table 1 available in PDF format.)
Retrieving Health Information. Four abstractors (2 monolingual in English, 2 bilingual in English and
Spanish) independently reviewed each Web site (spending a maximum of 90 minutes
per site using high-speed Internet connections) on October 18-30, 2000, and
November 6-13, 2000, to retrieve content related to the questions
(Online Table 1 available in PDF format).
Abstractors did not receive any of the condition-related clinical
elements prior to conducting each search. On average, 65% of retrieved Web
pages were common between abstractors. Search results were saved using a software
application (CatchTheWeb, Math Strategies, Greensboro, NC) that enabled project
researchers to accurately save, abstract, and manage Web pages for later use.
Retrieved materials were stripped of identifying information, printed,
and assembled into notebooks. Each notebook contained the materials retrieved
from a single search on a Web site (eg, 1 condition per site). The 78 unique
English-language notebooks averaged 250 printed pages (range, 21-547 printed
pages). The 32 unique Spanish-language notebooks averaged 68 printed pages
(range, 8-366 printed pages). A total of 21 711 printed pages (2660 Web
pages, defined by the programmer's end-of-page mark) were abstracted across
4 conditions: 19 529 printed pages (2262 Web pages) from English-language
and 2182 printed pages (398 Web pages) from Spanish-language Web sites.
Evaluating the Web Sites. Thirty-four physicians (30 monolingual in English, 4 bilingual in English
and Spanish) from around the United States were recruited to evaluate the
abstractor-retrieved material. All reviewers were board eligible or board
certified in family medicine, general surgery, internal medicine (including
allergy and immunology, hematology and oncology, infectious diseases, pulmonary
and critical care), or pediatrics. No reviewer rated more than 5 notebooks
for any condition or evaluated materials from the same Web site twice. Forty
English-language (51%) and 14 Spanish-language (44%) randomly selected notebooks
were evaluated by 2 reviewers. Each Web site underwent 2 to 4 reviews per
Four standardized rating forms were developed that listed the condition-related
topics, questions, and clinical elements (eg, 1 condition per form). Reviewers
were asked to rate the level of coverage for each clinical element as not
addressed, minimally addressed, or more than minimally addressed. Not addressed meant there was no reference to the issue on any page
of the notebook. Minimally addressed meant the clinical
element was mentioned at least briefly. For example, for breast cancer screening,
if mammography was mentioned as a way to identify early breast cancer, but
no mention was made of who should have mammograms, how often they should be
done, or their utility in reducing breast cancer mortality, this was considered
minimal coverage. More than minimally addressed meant
that most of the clinical elements were mentioned and the level of explanation
was more than cursory. For example, coverage was considered more than minimal
if a Web site mentioned that screening mammography was the best way for breast
cancer to be detected early in women older than 50 years, or that breast cancer
may be detected earlier by mammography than physical examination, or if a
detailed discussion of the pros and cons of mammography and the appropriate
ages for screening were provided.
Reviewers also rated the accuracy of content for each clinical element
that was at least minimally addressed: mostly incorrect, mostly correct, and
After rating Web site materials on coverage and accuracy, reviewers
were asked to list instances of conflicting information found during their
review. These conflicts were not limited to the set of clinical elements for
which coverage and accuracy were evaluated. Six categories of conflicting
information were identified: (1) treatments; (2) diagnosis; (3) definitions;
(4) adverse effects; (5) etiology and risk factors; and (6) incidence and
prevalence. Two project physicians (R.L.K. and J.I.A.) independently rated
whether the examples of conflicting information were minor, significant, or
potentially dangerous. Examples that were identified as significant or potentially
dangerous by both physicians were included in the final analysis.
We used Stata statistical software (version 6.0; Stata Corporation,
College Station, Tex). The unit of analysis was the link (specific URL [uniform
resource locator]) for the study of search engine efficiency, the standardized
rating form for the study of quality, and the Web site for the study of grade
Rating forms contained multiple ratings (corresponding to clinical elements)
of coverage and accuracy using the 3-point ordinal scales mentioned previously.
For purposes of analysis, summary measures were computed by averaging across
elements within a given rating form.
All analyses were conducted separately for English- and Spanish-language
search engines and Web sites. All statistical tests were 2-sided and were
assessed for significance at the .05 level. Measures were tested for variation
by condition, search engine, and site, as applicable. A 2-stage test procedure
was used to examine variation in each outcome by these independent categorical
variables. First, an omnibus or overall test of the association was performed.
If the omnibus test established that variation in the outcome of interest
was statistically significant for the categorical variable (condition, search
engine, site), a series of 2-sample follow-up tests were performed comparing
the outcome at each level of the categorical variable with the overall distribution
of the outcome.
The omnibus tests used were 1-way analysis of variance, the Kruskal-Wallis
rank-sum test, and the χ2 test of homogeneity for measures
that were normally, ordinally, and nominally distributed, respectively. Two-sample t tests, Wilcoxon rank-sum tests, and χ2
tests of homogeneity were the corresponding follow-up tests.
In the search engine study, interrater reliability of the judgments
by searchers and coders was high for both classification of links and content
In the Web site study, 2 measures of interrater reliability of Web site
reviewers were computed. A standard measure of reliability, computed as the
correlation in ratings between reviewers examining identical notebooks of
material retrieved from the same Web site, was calculated. To assess the sensitivity
of reviewer ratings to variation in the retrieved material (eg, the material
retrieved by abstractor 1 vs abstractor 2 on the same Web site for the same
condition), a second, more stringent measure of reliability was computed as
the correlation in ratings between reviewers examining different notebooks
of material from the same Web site and condition. We computed 16 interrater
reliabilities by the standard rule and 16 by the stringent rule for each language:
1 for every combination of the 4 conditions and the 4 assessments (any coverage,
more than minimal coverage, completely correct, and the combination of more
than minimal coverage and complete correctness). Thirty reviews were included
in each calculation of interrater reliability on English-language Web sites
and 12 reviews were included in each calculation of interrater reliability
on Spanish-language Web sites. The standard interrater reliability was 0.90
or greater for all conditions and measures, averaging 0.96 for both English-
and Spanish-language sites. The second measure of interrater reliability averaged
0.77 for English- and 0.60 for Spanish-language Web sites.
To determine reading grade level, we used the Fry Readability Graph
(FRG) method, which has been validated in both English and Spanish.48,49 Three sample passages of text exactly
100 words in length from the beginning, middle, and end of the material abstracted
from each Web site were selected. For each 100-word sample, the number of
sentences and syllables were counted. The FRG calculates an estimated grade
level as a function of the average number of sentences and average number
of syllables for each source document. The FRG accounts for the fact that
Spanish documents tend to have more syllables per word than English documents
of the same reading level.50
Figure 1 and Table 2 summarize the experience that someone seeking information
would have when using a search engine. The first page of search results from
all English-language search engines listed 3735 links, 1265 (34%) of which
were relevant. The proportion of these links that were relevant varied significantly
by search engine (P<.001). Among 389 sampled relevant
links, 288 (74%) selected led to a content page within 10 clicks, and 230
(79%) of those pages contained content relevant to the search topic. Thus,
when following apparently relevant links, relevant content was identified
59% of the time (Figure 1 and Table 2). There was significant variation
in the likelihood of reaching relevant content from potentially relevant links
by search engine (range, 35%-88%, P<.001, Table 2). One in 5 (20%) links on the first
page of search results led to relevant content (Table 2). There was no significant variation among search engines
in the probability that first-page links would lead to relevant content.
Results for Spanish-language search engines were similar. The first
page of results returned 1685 links, 296 (18%) of which were relevant. Among
the 151 selected relevant links, 101 (67%) led to content and 95 (94%) of
those pages contained relevant content. Overall, 63% of relevant links led
to relevant content (Figure 1 and Table 2). There was significant variation
in the likelihood of reaching relevant content by search engine (range, 49%-78%, P<.001, Table 2).
Twelve percent of all links on the first page of search results led to relevant
content, with no significant variation by search engine (Table 2).
Fifty-six percent (n = 129) of the relevant English-language content
pages contained explicit advertisements and 44% (n = 101) contained other
promotional material. The presence of advertisements and promotional materials
on relevant Spanish-language content pages was 36% (n = 34) and 21% (n = 20),
Coverage of Topics. Coverage is reported as the mean proportion of clinical elements across
sites with no coverage; minimal coverage; and more than minimal coverage of
the clinical elements for each condition. Among English-language sites, the
mean percentage of clinical elements that were not covered varied significantly
across conditions: 16% for breast cancer, 27% for childhood asthma, 20% for
depression, and 35% for obesity (Table 3). Topics that were not covered most often included alternatives
to standard medical and surgical treatments for breast cancer (28%), symptoms
suggestive of poorly controlled asthma (48%), evaluation of depression (33%),
and safety and effectiveness of dietary supplements used for obesity (61%).
On Spanish-language Web sites, the mean percentage of clinical elements
receiving no coverage also varied significantly across conditions: 49% for
breast cancer, 33% for childhood asthma, 61% for depression, and 69% for obesity
(Table 3). Topics that were not
covered most often included alternatives to standard medical and surgical
treatments for breast cancer (90%), expected benefits and possible adverse
effects of asthma therapies (44%), evaluation of depression (84%), safety
and effectiveness of dietary supplements (100%), and types of popular diets
for obesity (100%).
Accuracy of Information. On English-language Web sites, the mean percentage of covered clinical
elements for which the text was completely correct was 91% for breast cancer,
84% for childhood asthma, 75% for depression, and 86% for obesity. In Spanish,
the mean percentages were 96% for breast cancer, 53% for childhood asthma,
63% for depression, and 68% for obesity.
On English-language sites, the mean percentages of covered clinical
elements rated as mostly incorrect were 0% for breast cancer, 3% for childhood
asthma, 3% for depression, and 3% for obesity. In Spanish, the mean proportions
were 0% for breast cancer, 4% for childhood asthma, 18% for depression, and
0% for obesity. As an example, one depression site stated that omega-3 fatty
acid deficiencies cause major depressive disorders. One childhood asthma site
describes cockroaches as the leading cause of asthma among children.
Combined Measure of Coverage and Accuracy. In English, the mean percentage of clinical elements receiving more
than minimal coverage that were completely accurate was 63% for breast cancer,
36% for childhood asthma, 44% for depression, and 37% for obesity. For breast
cancer, depression, and obesity, there was significant variation among English-language
Web sites (Table 3). Two sites
performed statistically better than average: http://www.Oncolink.com for breast cancer and
http://www.nimh.nih.gov for depression
(for both, P = .02). No Web site was statistically
better than the condition average for childhood asthma and obesity.
On Spanish-language Web sites, the corresponding proportions receiving
more than minimal coverage that were completely accurate were 39% for breast
cancer, 23% for childhood asthma, 12% for depression, and 15% for obesity.
There was significant variation among Web sites for breast cancer and depression
(P<.05), but no Web site was statistically better
than the condition average.
For a comprehensive summary of coverage and accuracy of elements of
condition-related topics for the 4 conditions,
see Online Table 2 available in PDF format.
Conflicting Information. Overall, just over half of English-language Web site reviews revealed
1 or more conflicts in the information provided (Table 4; Spanish reviewers noted no conflicts). Conflicts involved
treatment (present in 35% of reviews), diagnosis (13%), definitions (7%),
adverse effects (5%), etiology and risk factors (5%), and incidence and prevalence
(4%). As an example, a childhood asthma site stated at one point that inhaled
steroids do not stunt growth and later stated that inhaled steroids do stunt
growth. Materials on depression were the most likely to have conflicts on
treatment, whereas breast cancer materials were the most likely to contain
conflicts on diagnosis (Table 4, P<.001).
For English-language Web sites, the average reading level was collegiate
(mean [SD] grade, 13.2 [2.1]) and ranged from 10th grade to graduate school
level (Figure 2). For the Spanish-language
Web sites, the average reading level was at 10th grade (mean [SD] grade, 9.9
[2.5]) and ranged from grades 7 to 13 (Figure
2). The mean grade reading level for the English-language Web sites
was significantly higher than for Spanish-language Web sites (P<.003).
To our knowledge, this is the first study to examine English- and Spanish-language
health information on the Internet across multiple conditions. We found that
search engines are only moderately efficient in locating information on a
particular health topic. More than half of consumers who use the Internet
report that they spend about a half hour looking for health information, so
efficiency is an important aspect of performance (Carolyn Gratzer, Cyber Dialogue,
oral communication, October 13, 2000). Overall, 1 in 5 links identified by
10 English-language and 1 in 8 links from 4 Spanish-language search engines
led to a Web page with relevant content.
We examined 2 dimensions of Web site quality: whether key consumer questions
were covered and whether the information was accurate. Although we found thousands
of pages of material related to key questions, there were substantial gaps
in the availability of key information. Only half of the topics that the expert
panels thought were important for consumers were covered more than minimally.
This deficiency was particularly striking across Spanish-language sites, where
more than half of the condition-related topics were not addressed.
Our results suggest that consumers using the Internet may have a difficult
time finding complete and accurate information on a health problem. If people
are relying on the Internet to make treatment decisions, including whether
to seek care, deficiencies in information could negatively influence consumer
decisions. For example, less than half of the Spanish-language materials explained
that mastectomy and lumpectomy plus radiation are equivalent treatments for
early-stage breast cancer.
The reading level of most Web-based material is quite high. All of the
English-language sites had material that required at least a 10th-grade reading
level, and more than half of the sites presented material at the college level.
Although 1 Spanish-language site presented material at the elementary school
level, all others required at least a ninth-grade reading level. According
to the 1992 National Adult Literacy Survey, 92 million adults in the United
States—almost 48% of the population—and more than 75% of current
welfare recipients have low or very low reading skills.51
Thus, even if wider access to computer technologies narrowed the digital divide,
the online health information currently available would be difficult for many
people to understand.
This study has some important limitations. First, the Internet is a
moving target, and we were able to take only a snapshot of its performance.
Changes in content over time are not represented. However, without dedicated
attention, it seems unlikely that the variability in performance, gaps in
availability of information, and high reading levels will change dramatically.
Second, we looked at a small set of search engines, Web sites, and conditions,
and hence cannot draw more general conclusions. However, because we included
the most popular search engines and Web sites, the results are likely to reflect
common experiences. Their variability in performance suggests that the likelihood
of finding the information one needs, on the topic of one's choice, will depend
on where one starts. Third, we studied the performance of search engines using
very simple search terms. Had more sophisticated search strategies been used,
our findings might have been different. Fourth, our research was not a natural
experiment (eg, using actual consumers to search for information and testing
their knowledge after such a search), so we cannot draw conclusions about
what people actually encounter when they search for information, or about
how well they are able to interpret the information they find. Fifth, the
necessary inclusion of medical terms in analyzed text may be partially responsible
for high estimated grade reading levels, although we assessed Flesch-Kincaid
scores52 in the same passages with and without
the medical terminology included, and when medical terminology was removed,
the grade level declined by only 0.3 grade levels on average (range, 0.1-0.8).
Sixth, because the Internet and many Web sites make available a large volume
of material, it is possible that our searchers missed information that was
available on a site. For that reason, we had 2 searchers look for information
on each site, and they found different material. But the conclusions that
reviewers reached about sites were quite consistent, even when the retrieved
material they evaluated was different. Furthermore, our searchers were skilled,
trained for the task, and devoted more time to finding information than people
report spending on average. Thus, if our searchers could not find the information,
probably most consumers also would have difficulty doing so.
Our results suggest several ways to make Web-based information more
useful. First, variation among search engines suggests that it is possible
to improve search efficiency, perhaps by improving the methods for indexing
Web pages. Second, the lack of critical information for each of the 4 conditions
suggests that Web site developers should focus on providing more complete
information. Third, Web site developers need to ensure that the information
is accurate and free from conflict. Although accuracy levels were generally
high, the presence of conflicting information makes it possible that people
will be more confused than enlightened. Fourth, some mechanism for routinely
rating Web sites for coverage and accuracy may be useful. Comprehensive assessments
of the type conducted for this study are highly labor intensive, but simpler
methods also may be effective. Fifth, information on the Web needs to be made
more readable if the Internet is to serve as a "leveler" across different
The Internet has the potential to be a powerful resource for meeting
some of the public's health information needs. Ideally, consumers would be
able to learn much of what they need to know from high-quality Web sites,
so that the limited time they have with their physicians could be used more
efficiently. However, this requires that Web sites present well-organized
and accurate information in a way that is understandable. Research is needed
on how the public's use of the Internet facilitates, complements, or complicates
patient-physician communication and on how patients and health professionals
can make better use of this resource.
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