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Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search

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Abstract

The World Wide Web provides an abundant source of medical information. This information can assist people who are not healthcare professionals to better understand health and disease, and to provide them with feasible explanations for symptoms. However, the Web has the potential to increase the anxieties of people who have little or no medical training, especially when Web search is employed as a diagnostic procedure. We use the term cyberchondria to refer to the unfounded escalation of concerns about common symptomatology, based on the review of search results and literature on the Web. We performed a large-scale, longitudinal, log-based study of how people search for medical information online, supported by a large-scale survey of 515 individuals' health-related search experiences. We focused on the extent to which common, likely innocuous symptoms can escalate into the review of content on serious, rare conditions that are linked to the common symptoms. Our results show that Web search engines have the potential to escalate medical concerns. We show that escalation is influenced by the amount and distribution of medical content viewed by users, the presence of escalatory terminology in pages visited, and a user's predisposition to escalate versus to seek more reasonable explanations for ailments. We also demonstrate the persistence of post-session anxiety following escalations and the effect that such anxieties can have on interrupting user's activities across multiple sessions. Our findings underscore the potential costs and challenges of cyberchondria and suggest actionable design implications that hold opportunity for improving the search and navigation experience for people turning to the Web to interpret common symptoms.
Cyberchondria: Studies of the Escalation of
Medical Concerns in Web Search
RYEN W. WHITE and ERIC HORVITZ
Microsoft Research
________________________________________________________________________
The World Wide Web provides an abundant source of medical information. This information can assist people
who are not healthcare professionals to better understand health and illness, and to provide them with feasible
explanations for symptoms. However, the Web has the potential to increase the anxieties of people who have
little or no medical training, especially when Web search is employed as a diagnostic procedure. We use the
term cyberchondria to refer to the unfounded escalation of concerns about common symptomatology, based on
the review of search results and literature on the Web. We performed a large-scale, longitudinal, log-based
study of how people search for medical information online, supported by a survey of 515 individuals’ health-
related search experiences. We focused on the extent to which common, likely innocuous symptoms can
escalate into the review of content on serious, rare conditions that are linked to the common symptoms. Our
results show that Web search engines have the potential to escalate medical concerns. We show that escalation
is associated with the amount and distribution of medical content viewed by users, the presence of escalatory
terminology in pages visited, and a user’s predisposition to escalate versus to seek more reasonable explanations
for ailments. We also demonstrate the persistence of post-session anxiety following escalations and the effect
that such anxieties can have on interrupting user’s activities across multiple sessions. Our findings underscore
the potential costs and challenges of cyberchondria and suggest actionable design implications that hold
opportunity for improving the search and navigation experience for people turning to the Web to interpret
common symptoms.
Categories and Subject Descriptors: H3.3 [Information Storage and Retrieval]: Information Search and
Retrieval Search process, Query formulation
General Terms: Human Factors, Experimentation
Additional Key Words and Phrases: Cyberchondria
________________________________________________________________________
Authors’ addresses: Microsoft Research, One Microsoft Way, Redmond, WA 98052; email: {ryenw,
horvitz}@microsoft.com
1. INTRODUCTION
The World Wide Web has the potential to provide valuable medical information to
people, where Web sites such as WebMD (http://www.webmd.com) and MSN Health
and Fitness (http://health.msn.com) provide answers to such questions as whether
concerning symptoms might indicate the onset of a serious, acute or chronic condition, or
whether such fears are unfounded. However, the use of Web search as a diagnostic
methodologywhere queries describing symptoms are input and the rank and
information of results are interpreted as diagnostic conclusionscan lead users to believe
that common symptoms are likely the result of serious illnesses. Such escalations from
common symptoms to serious concerns may lead to unnecessary anxiety, investment of
time, and expensive engagements with healthcare professionals. We use the term
cyberchondria to refer to the unfounded escalation of concerns about common
symptomatology, based on the review of search results and literature on the Web.
The large volumes of medical information on the Web, some of which is erroneous, may
mislead users with health concerns. Much has been written in the medical community
about the unreliability of Web content in general [Eysenbach 1998; Jadad and Gagliardi
1998; Eysenbach et al. 2002] or content about specific conditions such as cancer
[Biermann et al. 1999]. Indeed, studies have shown that, although 8 in 10 American
adults have searched for healthcare information online, 75% refrain from checking key
quality indicators such as the validity of the source and the creation date of medical
information [Pew Internet and American Life Project 2007]. Berland and colleagues
[2001] suggest that medical information present on Web sites is generally valid, although
they also find that it is likely to be incomplete. Eysenbach and colleagues [2002]
systematically reviewed health Website evaluations and found that the most frequently
used quality criteria included accuracy, completeness, and design (e.g., visual appeal,
layout, readability). In their review, the authors noted that 70% of the studies they had
examined concluded that the quality of health-related Web content is low. In addition,
Benigeri and Pluye [2003] show that exposing people with no medical training to
complex terminology and descriptions of medical conditions may put them at risk of
harm from self-diagnosis and self-treatment. These factors combine to make the Web a
potentially dangerous and expensive place for health seekers.
The information obtained from healthcare-related searches can affect peoples’ decisions
about when to engage a physician for assistance with diagnosis or therapy, how to treat
an acute illness or cope with a chronic condition, as well as their overall approach to
maintaining their health or the health of someone in their care. Beyond considerations of
illness, information drawn from the Web can influence how people reflect and make
decisions about their health and wellbeing, including the attention they seek from
healthcare professionals, and behaviors with regard to diet, exercise, and preventative,
proactive health activities.
In this article, we present the findings of a log-based study of anonymized data about
online searches for medical information drawn from a large set of data on Web search
behavior shared voluntarily by a large number of users of Web search engines. We focus
particularly on the association between the input of search terms that describe common
symptoms and shifts of focus of attention to serious illnessesillnesses that are rarely the
causes of such common complaints. We contrast medical search sessions that show a
trajectory from basic symptoms to a review of content that may induce or increase
anxiety with sessions that do not lead to such potentially troubling information. We
supplement the log analysis where appropriate with findings from a survey of 515
individuals’ health-related search experiences. Our study’s log-based methodology lets us
examine at scale how people interact with medical information and represents an initial
step toward understanding cyberchondria. Its findings, and the implications drawn from
them, highlight a nascent set of opportunities for researchers in academia and industry to
help people wrestling with the access, comprehension, and interpretation of healthcare
information.
Two research objectives guided our exploration: (i) Characterizing cyberchondria: We
characterize the nature and frequency of the escalation of concern about what are likely to
be common, innocuous symptoms to concerns about more serious illnesses, and (ii)
Studying the effects of cyberchondria over time: We investigate whether medical
concerns linked to common symptoms persist over multiple sessions, following a shift of
focus of attention to serious illnesses, and characterize the extent to which they interfere
with subsequent user activities. Identifying the recurrence of concerns about a rare
disorderespecially when the recurrence occurs during another search taskmay
indicate that earlier escalations extend over time, and that anxieties or heightened
awareness continues to interrupt users’ online activities over prolonged time periods.
Such findings may be proxies for the rise and persistence of deep concerns that may
disrupt other aspects of daily life. Findings of these explorations have implications for the
design of supportive user interface features and specialized indexing and ranking
algorithms, including the use of explicit probabilistic inference about the likelihoods of
different disorders given the sets of symptoms input by users. Findings about long-term
concerns and behaviors associated with medical anxiety induced or heightened by
interactions with the Web have implications for the design of personalized systems that
can offer tailored support for individual searchers over time.
We analyzed interaction logs of searching and browsing activities of consenting users
with automated tools. We temper our results by stressing that our utmost attention to user
privacy makes it impossible and unreasonable to know details about the rationale and
influence of searches. We did not have access to information about peoples’ non-Web
search behaviors (e.g., interactions with physicians, or patients with similar symptoms or
diagnoses), and cannot be certain that observed search engine users were actually
becoming more anxious during interactions with medical content on the Web. We also
do not have evidence about online users’ predispositions to anxiety, and to their medical
anxiety more particularly. People with heightened awareness or a priori interest in serious
illnesses given basic concerns may also be more likely to experience unnecessary
anxiety. Such a predisposition may be associated with unfounded medical concerns
regardless of online interactions, thus further confounding the induction of causal
arguments about the influence of searching and browsing on medical anxiety.
Given the nature of our study, and our paramount respect of user privacy, it is difficult to
identify and assess frank anxiety. However, we can analyze with confidence the focus of
attention of people performing online searches. Thus, we broaden the scope of
cyberchondria to include the heightened awareness, attention, and interest surrounding
serious medical conditions. We believe that our work serves as an important step toward
gaining better understanding of how people search for medical information online, how
the severity of their concerns may change over the course of a search session, and, more
generally, the challenges that cyberchondria presents for search engine designers, and
how these challenges might be addressed.
We structure the remainder of this article as follows. We discuss related research in
Section 2. In Section 3, we motivate this research through an empirical study of the
potential for escalation from examining Web search results. In Section 4, we describe key
aspects of the data and analyses employed in our study. Section 5 describes the findings
of our investigation into within-session escalations, and Section 6 covers longer-term
persistence of anxieties and interruptions. In Section 7, we discuss our findings and
describe techniques that may help alleviate inappropriate health anxiety or unwarranted
interest in serious medical conditions given symptoms. We summarize and conclude in
Section 8.
2. RELATED RESEARCH
The wealth of medical information discovered by Web search engines creates a potential
for users to conduct their own diagnosis and healthcare assessment based on limited
knowledge of diseases and interpretation of their symptoms.
Hypochondriasis is often characterized by fears that minor bodily symptoms may indicate
a serious illness, constant self-examination and self-diagnosis, and a preoccupation with
one’s body. The small fraction (1-5%) of the general population afflicted with the
disorder hypochondria are particularly predisposed to the emergence of unfounded
concerns, especially since they are often undiscerning about the source of their medical
information [Barsky and Klerman 1983]. Studies have shown that hypochondriacs
express doubt and disbelief in their physicians’ diagnosis, report that doctors’ reassurance
about an absence of a serious medical condition is unconvincing, and may pay particular
attention to diseases with common or ambiguous symptoms [Barsky and Klerman 1983].
The Web is fertile ground for those with hypochondria to conduct detailed investigations
into their perceived conditions.
The diagnosis and treatment of hypochondria has received attention in the medical
community [Barsky and Klerman 1983; Barsky and Ahern 2004]. These studies have
generally targeted the development and diagnosis of hypochondria, the self-perceptions
of hypochondriacs, and the use of techniques such as cognitive behavioral therapy to treat
hypochondriasis. We use the term hypochondria in the traditional manner, as a disorder
associated with a tendency to have unfounded medical fears. Cyberchondria as we define
it is an unfounded medical fear, or a heightened attention to serious disorders, based on
the review of Web content. The term escalation defines specific instances of
cyberchondria, within a single search session.
Beyond frank hypochondria as characterized by definitions in the Diagnostic and
Statistical Manual of Mental Disorders [American Psychiatric Association 1994] or
diagnoses by psychologists or psychiatrists, peoples’ tendencies to become anxious about
unlikely medical disorders may sit on a spectrum of concern. Medical experts have
argued for action to lessen the likelihood of unnecessary health anxiety for all consumers
of health information, regardless of whether they are diagnosed as suffering from
hypochondria (e.g., [Asmundson et al. 2001]). Asmundson and colleagues [2001]
describe research on the clinical features and current theoretical understanding of health
anxiety, with a particular focus on hypochondriasis. There have also been studies on
problems with the review of health-related Web content (e.g., [Cline and Haynes 2001;
Eysenbach and Köhler 2002; Baker et al. 2003; Sillence et al. 2004; Eastin and Guinsler
2006; Lewis 2006]). Cline and Haynes [2001] present a review of work in this area that
suggests that public health professionals should be concerned about online health seeking,
consider potential benefits, synthesize quality concerns, and identify criteria for
evaluating online health information. Eysenbach and hler [2002] used focus groups
and naturalistic observation to study users attempting assigned search tasks on the Web.
The investigators found that the credibility of Websites (in terms of source, design,
scientific or official appearance, language used, and ease of use) was important in the
focus group setting but appeared less important in practice, with many participants
largely ignoring the source of their medical information. Baker and colleagues [2003]
measured the extent of Web use for healthcare among a representative sample of the
United States population, to examine the prevalence of e-mail use for health care, and to
examine the effects that Web and e-mail use has on users knowledge about health care
matters and their use of the health care system. They base their findings on self-reported
rates of Web and e-mail use gathered through telephone interviews. They found that users
rarely use email to communicate with physicians and that the influence of the Web on the
utilization of external healthcare is uncertain. Sillence and colleagues [2004] studied the
influence of design and information content on the trust and mistrust of online health
sites. They conducted an observational study of a small number of subjects engaged in
structured and unstructured search sessions over a four-week period. They found that
aspects of design appeal engendered mistrust, whereas the credibility of information and
personalization of content engendered user trust. Eastin and Guinsler [2006] investigated
the relationship between online health information seeking and healthcare utilization such
as visiting a general practitioner. Their findings suggest that an individual’s level of
health anxiety moderates the relationship between online health information seeking and
health care utilization decisions. Lewis [2006] discusses the growing trend towards the
general population accessing information about health-related matters online. She
performed a qualitative study into young peoples use of the Web for health material that
showed that in fact they are often skeptical consumers of the material they encounter. The
findings of these studies demonstrate some of the conflicting opinions around the effect
of healthcare information on human behavior. This may be attributable to differences in
the goals of the studies, the samples used, and the experimental methodologies.
Studies on unfounded medical concerns associated with the review of Web content,
including many of those cited above, typically rely solely on responses to questionnaires,
in-person interviews, telephone surveys, or monitor interaction behavior for assigned
tasks. These data-gathering methods are not amenable to the following of behavior in the
world as assessments are often captured after the fact and depend on participant self-
reporting, which may be biased. The log-based methodology employed in our study
provides a window into Web searchers’ natural information-seeking behaviors over a
sustained period of time, allowing for a more accurate description of how people search
for health-related information.
Web interaction logs have been used previously to study medical Web search behavior
(e.g., [Bhavnani et al. 2003; Spink et al. 2004]). Bhavnani and colleagues [2003]
explored the timing and numbers of pages visited by experts and non-experts, and
demonstrated that term co-occurrence counts for medical symptoms and disorders on
Web pages can be a reasonable predictor of the degree of influence on user search
behavior. Spink and colleagues [2004] characterized healthcare-related queries issued to
Web search engines, and showed that users were gradually shifting from general-purpose
search engines to specialized Web sites for medical- and health-related queries. Ayers
and Kronenfeld [2007] employed a similar methodology and utilize log data on Web use,
and perform a multiple regression analysis to explore the relationship between chronic
medical conditions and frequency of Web use, as well as changes in health behavior due
to frequency of Web use. Their findings suggest that it was not the presence of one
particular chronic illness, but rather the total number of chronic conditions that
determines the nature of Web use. They also found that the more frequently a person uses
the Web as a source of health information, the more likely they are to change their health
behavior. However, unlike our investigation, the authors did not study Web search
behavior or examine the escalation of seemingly innocuous concerns to more serious
illnesses during Web search sessions. Our focus on Web search is an important
differentiator between our work and previous research. Web search is especially
important for many users given their reliance on search engines to locate Web content.
Information retrieval (IR) and information science researchers have investigated the
search behavior of medical domain experts [Hersh et al. 1998, 2002; Bhavnani 2002;
Wildemuth 2004], with a view to better understanding the search behavior of those with
specialist domain knowledge. Hersh and colleagues [1998] review research in the
medical informatics and information science literature on how physicians use IR tools to
support clinical question-answering and decision-making. They found that retrieval
technology was inadequate for this purpose and generally retrieved less than half of the
relevant articles on a given topic. They follow-up this review with a study of how
medical and nurse practitioner students use MEDLINE to gather evidence for clinical
question answering [Hersh et al. 2002]. Their findings show that these users were only
moderately successful at answering clinical questions with the assistance of literature
searching. Bhavnani [2002] observed healthcare and online shopping experts while they
performed search tasks inside and outside their domains of expertise. The findings of the
study identified domain-specific search strategies in each domain, and that such search
knowledge is not automatically acquired from using general-purpose search engines.
Wildemuth [2004] performed a longitudinal study examining the tactics of medical
students searching a factual database in microbiology. Findings showed that over the
course of the study changes in students’ search tactics were observed as their domain
knowledge increased.
Despite the broad range of previous work in this area, none of the prior studies have
addressed the important issue of the links between online activity and medical anxiety,
and the potential escalation of medical concerns during Web search and browsing. In this
article, we take a first step towards tackling this important challenge through an
exploratory study of medical escalation in the Web search domain.
3. POTENTIAL FOR ESCALATION
At the outset of our studies of cyberchondria, we explored general statistical clues that
could provide insights into how Web content might typically link searches focused on
common symptoms to content describing relatively rare, serious illnesses versus more
common, benign explanations. Searchers may often seek information (implicitly or
explicitly) on the probability of different disorders given perceived symptoms. Thus, we
have been particularly interested in how the distribution of medical content and links
between content and symptoms may diverge from a distribution that is representative of
the prior and posterior probabilities of medical disorders. We sought to compare these
statistical results from three different corpora: (i) a large random sample of the Web, (ii)
results from a general-purpose Web search engine, and (iii) results from a specialized
medical search engine.
We retrieved a 40-million page random sample of Web content based on a breadth-first
crawl of all categories in the Open Directory Project (ODP) (http://dmoz.org), a human-
edited directory of the Web. Following the crawl, for each of three common symptoms
(headache, muscle twitches, and chest pain), we compared the co-occurrence statistics for
the symptom and the corresponding most likely benign explanations with the co-
occurrences of the symptom and serious, but less likely disorders. We excluded co-
occurrence instances if a negation appeared within five words of the symptom in the page
(e.g., ―…headache not malignant…‖).
We also computed similar sets of term co-occurrence statistics from the following two
sources:
Web search engine: Microsoft’s Live Search engine provided Web search results.
Domain search engine: MSN Health and Fitness provided medical search results.
MSN Health and Fitness (http://health.msn.com) is a Web-based provider of health-
related information that offers access to a large number of articles from authoritative
sources (e.g., http://www.mayoclinic.com). Such specialized engines have access to
a range of authoritative medical resources that are typically not available through a
single Web site or Web search engine.
We issued a query comprising solely of the symptom name to each of these sources and
computed term co-occurrence statistics in content contained on the pages of the top-100
search results. We used synonyms of the conditions where appropriate, e.g., for
amyotrophic lateral sclerosis we also included its acronym, ALS, Lou Gehrig’s disease,
and motor neuron disease.
In Table I, we list symptoms, some common non-serious explanations, and more serious
concerns, along with associated probabilities, from each of the random crawl, Web
search, and specialized domain search.
Table I. Probability of Mention of Cause Given Symptom.
Symptom
Cause
Web
crawl
Web
search
Domain
search
headache
caffeine withdrawal
.29
.26
.25
tension
.68
.48
.75
brain tumor
.03
.26
.00
muscle twitches
benign fasciculation
.53
.12
.34
muscle strain
.40
.38
.66
ALS
.07
.50
.00
chest pain
indigestion
.28
.35
.38
heartburn
.57
.28
.52
heart attack
.15
.37
.10
As can be seen in Table I, the estimates for Web search differ dramatically from those of
Web crawl or for domain search, with more weight being given to serious conditions. For
example, the co-occurrence statistics for the Web crawl may be interpreted naïvely by a
searcher as indicating that there is a probability of 0.03 that ―headache‖ is associated with
―brain tumor,‖ 0.29 for ―caffeine withdrawal,‖ and 0.68 for ―tension.‖ In reality, the
probability of a brain tumor, given the chief complaint of headache, is much smaller than
0.03. Headaches are exceedingly common and the background chance per year of a brain
tumor, based on the U.S. annual incidence rate, is 0.000116 (around 1:10,000). A naïve
probability estimate of ―brain tumor‖ given ―headache‖ based on co-occurrence statistics
in the top-10 Web search results was 0.26, more than eight times the Web estimate, and
significantly higher than the general incidence rate. In comparison, co-occurrence
statistics from domain search were roughly in line with the Web estimate.
Other examples follow a similar pattern. Muscle twitches may herald the onset of ALS.
However, the twitching of muscles does not definitively mean someone has this serious
condition. U.S. annual incidence rates for ALS are approximately 1:55,000, or a
background likelihood of ALS of 0.0000186. Although the latter incidence rate is for the
overall population, not for people who report the rise of twitching (or of the awareness of
twitching), the incidence rate provides a clue as to the low probability of ALS given
muscle twitches. In fact, benign twitches are quite common in the population, being
associated with such benign causes as muscle fatigue, stress, and caffeine. Beyond the
intermittent twitching of muscles (e.g., common eyelid twitches) that come and go, are
more salient but still benign presentations of twitching based in poorly understood
phenomena that are grouped by physicians into the phrase benign fasciculation syndrome.
Experts in neuromuscular disorders report that they can often discriminate between the
potential subtle differences between benign muscle twitches and more concerning
twitching, especially in the context of other clues. However, the subtleties in
interpretation and implication that come with expertise are lost in web content that simply
refers to the link between ―twitches‖ or ―fasciculations‖ and the onset of ALS.
As another example, let us consider the frequency of observing the topic heart attack‖ in
Web search results relative to other explanations for queries about chest pain.‖ We shall
focus a bit more deeply on the complaint of chest pain, given that heart disease is the
leading cause of death in the United States. Results of our co-occurrence analyses for the
complaint of chest pain are displayed in Table I. On the broad crawled Web content,
heart attack co-occurs with chest pain 15 percent of the time. Heart attack co-occurs
with chest pain in 37 percent of the content drawn from the top-ranked search results for
a broad Web search and 10 percent of content drawn from medical domain search.
The onset of chest pain is a worrying sign as it can indicate the rise of a coronary event in
a previously healthy person. Early intervention that brings rapid access to a medical team
and hospital-based care can be important in the survival of a patient with an acute
coronary syndrome. However, multiple non-cardiac factors can be at the root of chest
pain. Chest pain can often be an indication of less serious esophageal, gastrointestinal,
and musculoskeletal problems, some that will disappear over time without any special
treatment.
From an expert’s perspective, the a priori likelihood of the onset of a first acute cardiac
event in a previously health person depends on several factors. Considerations include
the age and gender of the person, and details about the nature of the painnuances that
are not necessarily captured or reported in Web queries and web content that simply refer
to ―chest pain.‖ Non-cardiac chest pain is common in patients presenting to hospital
emergency departments. One study estimated that as many as 25% of people
complaining of chest pain who are concerned enough to seek care at a hospital
emergency department have non-cardiac chest pain that is associated or amplified by a
panic disorder [Fleet, et al., 1996; Huffman and Pollack, 2003]. For people who have not
yet been diagnosed with cardiac disease, a meta-analysis identified several key factors as
indications that the patient is primarily grappling with anxiety [Huffman and Pollack,
2003]. These factors include atypical quality of chest pain, a high degree of self-reported
anxiety, and younger age.
The probability of the rise of an acute coronary event in a previously healthy person is
sensitive to age and gender and these factors can be made salient to worried searchers.
Heart attacks are rare in people under 35. The average annual rates of the first major
cardiovascular event have been reported to be 0.003 in men at ages 35 to 44 rising to
0.074 at ages 85 to 94. Comparable rates in women are seen about ten years later, with
the gap between the rates in women and men getting smaller with advances in age [Hurst,
2002]. Another study found that the incidence rate of hospitalization for myocardial
infarction, for people in the group 35 to 74 years of age is 0.004 for males and 0.002 for
females [Rosamond et al., 1998]. A study of the annual incidence rate of heart disease in
women found an incidence of disease for women 49 years of age or younger to be
0.00013, 0.00053 for women 50 to 54 years of age, 0.00149 for women 55 to 59 years of
age, 0.00214 for women 60 to 64 years of age, and 0.00244 for women 65 years of age or
older [Hu et al., 2000].
We note that the cited incidence rates for the onset of heart disease are not conditioned on
the existence of chest pain. They also do not consider such known risk factors as having
diabetes mellitus or having a parent who experienced a cardiac problem early in life.
However, concerns about the onset of an acute heart problem in a healthy, young person
can be tempered with an appreciation for the background incidence rates and knowledge
that various types of chest pain can be caused by non-cardiac and frequently benign
processes.
In summary, expert clinicians often probe subtleties of symptomatology and fuse together
multiple findings, including demographic considerations such as the gender and age of a
patient, in assessing the rough likelihoods of different explanations for a patient’s
concerns and symptoms. The subtleties of presentation and insightful fusion of
demographics, and multiple signs and symptoms are not easily accessible by people
seeking diagnostic support with Web search. The tendency of Web searchers to start with
symptoms that are coarsely reported and also coarsely referred to in Web content can
stimulate potentially unwarranted anxiety.
Our findings suggest that there is inappropriate escalatory risk associated with using
general Web search to support differential diagnosis, and that more valuable information
may come via search within expert medical sites, as results align better with statistical
estimates. However, unwarranted anxieties may come even with review of the specialized
sites. In the next section, we will describe a study aimed at characterizing the escalation
of health concerns (as observed through queries) both within single search sessions and
across multiple search sessions.
4. STUDY
In the second phase of our analysis, we performed a log-based study of health-related
Web searching behavior. The aim was to characterize the nature of within-session
escalations in querying and browsing behavior, and the longer-lasting effects of these
escalations. To study the escalation of health concerns, we formulated a list of relatively
common symptoms and associated benign and more serious illnesses to represent the
source and destination of escalations. Table II displays the list of symptoms and serious
illnesses that we considered. These lists were based on the International Classification of
Diseases 10th Edition (ICD-10) published by the World Health Organization, and pruned
based on common concerns expressed in commercial Web search engine query logs. In
our log-centric analysis, we also employed synonyms of symptoms and conditions to
increase coverage (e.g., including ―tiredness‖ in addition to ―fatigue‖). In addition, we
reviewed content on the U.S. National Library of Medicine’s PubMed service and other
Web-based medical resources to create a set of common explanations for each of the
medical symptoms. For example, likely explanations for ―insomnia‖ include ―stress,
―caffeine,‖ and ―jet lag.‖ These were verified and expanded by one of the authors (EH),
who received formal medical training within an MD/PhD program. Table II shows the set
of all medical symptoms, common explanations, and serious illnesses used in this study.
Note that for reference the explanations and serious illnesses for all of the 12 medical
symptoms are pooled and sorted alphabetically in Table II.
4.1 Medical Escalation
For the purposes of this investigation, we define escalations to be observed increases in
the severity of concerns represented by the search terms within a single search session.
We define a search session as a chronologically ordered set of Web pages initiated with a
query to a commercial Web search engine and terminating with a session inactivity
timeout of 30 minutes. A similar timeout has been used to demarcate search sessions in
previous work [Downey et al. 2007; White and Drucker 2007]. Query escalations are
revealed by queries issued by the user to a commercial search engine such as Google,
Yahoo!, or Live Search where query terminology is related to the serious illnesses
defined in Table II and/or associated with modifiers used to express grave concern (e.g.,
―chronic,‖ ―fatal‖).
It is also possible to study navigational escalations (i.e., escalations revealed by access to
potentially escalatory Web content rather than queries containing escalatory terms). We
experimented with term occurrence measures as a way to determine escalations
automatically by examining Web pages visited. For example, pages containing serious
illness names could be regarded as escalatory evidence, even if no escalation was evident
in the query stream. However, we encountered numerous challenges in extracting such
evidence from Web pages (e.g., pages containing lists of all possible explanations for a
given symptom may or may not be escalatory). Since queries are explicit indications of
user search intent, they are a more reliable source of escalatory evidence than implicit
evidence garnered from the content of visited Web pages. For this reason, we focus on
query escalations in our analysis.
4.2 Research Objectives
We specifically sought to explore the extent to which pursuing information on common,
innocuous symptoms can escalate into the review of content on serious, often rare
conditions that may be associated with the common symptoms. Our study aimed to
characterize the nature of query-based escalation from common symptoms to more
serious illnesses within a session, and the emergence of longer-term medical anxieties.
More broadly, we investigate increases in the focus of attention on serious medical
conditions, following the identification of an escalation in our logs.
As we mentioned, while anonymized interaction logs allow for studying actual behaviors
at a large scale, we cannot confirm with certainty a causal association between exposure
to Web search results and unfounded escalation of anxiety (e.g., users may simply be
curious about a condition). The findings presented in Section 3 demonstrate that Web
search has the potential to bias medical information toward more serious illnesses, and as
we will show in this log-based study and survey findings reported in this article, users
often gravitate toward serious illnesses for seemingly innocuous symptoms. Even if this
gravitation is a result of curiosity not anxiety, it is worthy of attention since interest may
Table II. Symptoms, Explanations, and Serious Illnesses.
Medical symptoms
breathlessness
chest pain
dizziness
fatigue
fever
headache
insomnia
lump
nausea
rash
stomach pain
twitching
Common explanations
acne
allergy
angina
anxiety
benign fasciculation
benign paroxysmal positional vertigo
boil
bruise
caffeine withdrawal
callus
common cold
constipation
corn
cyst
dehydration
dermatitis
dysphasia
ear infection
eczema
esophagitis
exercise
eyestrain
fatigue
food allergy
food poisoning
gastroenteritis
heartburn
hunger
indigestion
influenza
insect bite
irritation
jet lag
lactose intolerance
laryngitis
lipoma
migraine
mole
motion sickness
obesity
panic attack
pregnancy
sleep disorder
stress
sunburn
tension
throat infection
tiredness
tonsillitis
underactive thyroid
urinary tract infection
wart
evolve into concern and frank anxiety. We now describe data collected to meet our
research objectives.
4.3 Data Collection
We automatically mined the anonymized interaction logs of hundreds of thousands of
consenting Windows Live Toolbar users during an 11-month period. The Windows Live
Toolbar is a plug-in to the Internet Explorer browser that provides additional browser
functionality in return for users providing consent for their page-level interactions to be
logged. During installation of the toolbar users were invited to consent to their interaction
with Web pages being recorded (with a unique identifier assigned to each client) and used
to improve the performance of future systems. The information contained in our logs
included a client identifier, a timestamp for each page view, a unique browser window
identifier (to resolve ambiguities in determining which browser a page was viewed), and
the URL of the page visited. We stress again that user privacy and confidentiality was
paramount: no personal information was elicited, no attempt was made to identify or
study an individual, and findings were aggregated over multiple users. Logs contained
interaction with all major Web search engines such as Google, Yahoo!, or Live Search
and the pages that followed a result click. This provided us with a significant amount of
data on querying and browsing behavior. These data differ from that described in Section
3 in that we now study user interaction logs rather than search results and Web crawls.
Medical queries were identified in the logs based on string matching with a list of
terminology comprising the union of a consumer health vocabulary (described in detail in
[Zeng et al. 2007]), a list of drug names from the United States Food and Drug
Administration, and the lists of medical symptoms, common explanations, and serious
illnesses shown in Table II. Queries were labeled as medical if any of their constituent
terms matched a term in these collections. To improve coverage, we also included
spelling variants, inflections, and synonyms where appropriate (e.g., ―malignant‖ and
―malignancy‖ for ―cancer‖). We sought to minimize false-positives in identifying
medical queries. To this end, we manually analyzed a sample of ten-thousand queries
tagged as medical and created a list of stop words, stop phrases, and parsing rules
designed to exclude non-medical queries from the logs. For example, we sought to avoid
labeling as human medical queries pet ailments or non-medical queries containing
medical symptoms, e.g., ―saturday night fever.‖
We found that approximately 2% of all queries were health-related, and approximately
250 thousand users (around one quarter of our original user sample) engaged in at least
one medical search in the duration of the study. As our term list was limited, we believe
that this represents a conservative estimate of the likely larger number of medical queries
and concerned users in our logs. We focus on a subset of these users that submitted a
query with at least one of the medical symptoms shown in Table II. Since these searchers,
associated with the machines that served as sources of volunteered data, expressed
medical concerns and are involved in our study, we refer to these users as concerned
subjects in the remainder of this article. We now describe some relevant attributes of the
search interactions of these subjects.
4.4 Concerned Subjects
Of particular interest given our research objectives, were subjects that issued queries
containing any of the 12 medical symptoms within the period of time captured by the
duration of our logs. In total, 8,732 subjects issued queries containing at least one of
those symptoms and issued more than one query of any sort in the duration of the study,
providing an opportunity for observing sessions with an escalation.
In Table III, we present the mean average (M) and the standard deviation (SD) for
relevant aspects of the interaction behavior of these concerned subjects. Computed
attributes include: the number of queries issued, the number of search sessions per
searcher, the percentage of queries that contain a medical symptom, the number of search
sessions with a query containing a medical symptom, the number of unique concerns in
the queries they issue, the proportion of pages visited whose URL appears in the ―Health‖
category of the ODP,1 and the proportion of queries that are health-related.
Table III. Summary Statistics (per concerned subject).
Feature
M
SD
Number of queries
978.3
1065.2
Number of sessions
170.6
167.6
Number of unique symptoms
1.3
0.5
Number of queries with ≥ 1 symptom
10.6
13.6
Number of sessions with ≥ 1 symptom
2.3
2.4
Percentage of pages that are health-related
15.4
28.0
Percentage of queries that are health-related
3.6
6.0
The statistics show that, within the culled set of subjects, a small number of symptoms
are investigated, that approximately one in seven of the pages they visit is health-related,
and about one in thirty queries is health-related. Our analysis also indicates that 78.3% of
all queries related to a medical symptom occur within two weeks of the initial query for
that symptom. This suggests that searches for symptoms may occur in a bursty manner,
with periods of calm punctuated with periods of intense medical search activity.
Statistics such as these may be useful in determining whether some subjects may be
potentially predisposed to escalate (e.g., those that query for broad medical symptoms
regularly or those that visit a large number of consumer health sites). Later in this article,
we study whether there is any relationship between these features and the likelihood of
escalation (or non-escalation). Understanding such relationships could provide insight on
personalizing medical search in a way that could reduce the likelihood of inappropriate
escalation for a particular user or group of users.
4.5 Survey
In addition to the log-based approach outlined in this section, we also composed a survey
to elicit peoples’ perceptions of online health-related information, their experiences in
searching for health-related information online, and the influence of the Web on their
healthcare concerns and interests. We review relevant findings from the large survey. We
1 Matching URLs to the ―Health‖ category was conducted using incremental backoff up to the top-
level domain. The approach we use is similar to that proposed by Shen and colleagues [2005].
distributed the survey within Microsoft Corporation to 5,000 randomly selected
employees. Although Microsoft employees are not necessarily representative of the
online population, we have no evidence that the employees’ experiences with medical
Web search differ significantly from those of the general user population.
In the invitation to take the survey, we requested participation of people who had
performed at least one search for health-related information. Of the 5,000 people invited
to take the survey, 515 volunteers (350 males and 165 females) completed the survey for
a participation rate of 10.3%. The average age of respondents was 36.3 years (median =
35 years, SD = 8.2 years). The survey contained open and closed questions and covered a
broad range of issues in the health domain, including medical history and engagement
with healthcare professionals. Five-point scales were used to measure frequency, with the
following response options: always, often, occasionally, rarely, and never.
In Table IV (overleaf), we summarize responses to background questions regarding
respondent health-related search habits and their levels of health-related anxiety. The
findings show that participants believe that they perform approximately two health-
related searches per week and one search for a professionally undiagnosed medical
condition every two weeks. They primarily search for themselves or family members and
target information on symptoms and serious medical conditions. Around four in ten
respondents reported being concerned about having a serious medical condition based on
their own observations, when no condition was present. Nearly nine out of ten
respondents reported at least one instance where a Web search for the symptoms of basic
medical conditions led to their review of content on more serious illnesses; one in five
responded that this had happened to them frequently (i.e., responses were often or
always). We find these to be remarkable findings, especially given that respondents were
not overly anxious about medical concerns (i.e., only 3-4% of respondents reported that
they consider themselves to be ―a hypochondriac,‖ and the average health anxiety rating
was around three out of ten). The reported prevalence by people surveyed of the review
of serious disorders following searches on basic medical symptoms underscores the
importance of characterizing and learning more about the escalation of medical concerns
in online environments.
Table IV. Summary Statistics on Health-Related Search/Anxiety (per survey respondent).
Health-related search habits (N=515)
On average, how many health-related Web searches do
you perform per month?
M=10.22, SD=45.58, Median=2
On average, how many health-related Web searches for
professionally undiagnosed medical conditions do you
perform per month?
M=2.12, SD=5.84, Median=1
Who are your health-related Web searches primarily
for?
Yourself
58.1%
Relative
36.9%
Friend or work colleague
3.5%
Other
1.6%
When you seek health-related information online you
generally search for? (multiple responses permitted)
Information on symptoms
(e.g., headache, chest pain)
85.8%
Information on serious
medical conditions (e.g.,
cancer, myocardial
infarction)
49.1%
Medical diagnoses
41.7%
Forums or pages describing
others’ experiences with
similar conditions to your
own
38.1%
Other
6.2%
Health-related anxiety (N=515)
On a scale of 1 to 10, how would you rate your overall
anxiety about potential medical conditions that are not
present or currently undiagnosed (1 = don’t worry about
health issues, 10 = severe anxiety)
M=2.78, SD=1.71, Median=2
Do you think that you are a hypochondriac?
Yes
3.5%
No
96.5%
Have you ever been called a “hypochondriac” by friends,
family, or a health professional (e.g., a physician)?
Yes
4.7%
No
95.3%
Have you ever been concerned about having a serious
medical condition based on your own observation of
symptoms when no condition was present?
Yes
39.4%
No
60.6%
How often do your Web searches for symptoms / basic
medical conditions lead to your review of content
on serious illnesses?
Always
1.9%
Often
19.0%
Occasionally
42.3%
Rarely
28.5%
Never
8.2%
5. STUDYING WITHIN-SESSION MEDICAL ESCALATION
We now investigate the escalation of medical concerns where an initial focus on common
symptoms appears to shift to a focusing of attention on serious illnesses within a single
search session. As described earlier, we consider an escalation as occurring when a user
initially queries for or visits pages that contain innocuous medical symptoms, and then
searches for or browses to pages that contain more serious illnesses. Escalations may
arise from exposure to search results, pages that users visit from search results, or
external sources such as physician consultations, medical textbooks, or interactions with
others that share their symptoms. To minimize the influence of external factors, we focus
on search sessions containing a medical symptom in the queryqueries that suggest that
users have an immediate focus on medical information.
Given a symptom occurring within a session, we noted one of three possible outcomes as
follows:
Escalation: Session escalates to an uncommon, serious explanation for the medical
condition, e.g., queries for ―headache‖ escalate to queries for ―brain tumor.‖ We were
interested in escalations to serious concerns given an initial innocuous complaint. For
example, consider the following session:
Query [headache]
Visit http://pennhealth.com/ency/article/007222.htm
Query [headache tumor]
Query [brain tumor treatment]
A brain tumor is a concerning possibility when a searcher experiences headache.
However, the probability of a brain tumor given a general complaint of headache is
typically quite low.
Non-escalation: Session progresses to a non-serious and high-likelihood explanation for
the medical condition, e.g., queries for headache become queries for caffeine
withdrawal.‖ Non-escalations are seemingly appropriate given the initial complaint. For
example:
Query [headache]
Visit http://www.headaches.org/consumer/educationalmodules/caffeine/fast.html
Query [headache coffee]
Query [caffeine withdrawal symptoms]
No change: Session does not escalate or does not continue; either same query is issued
repeatedly, another unrelated or non-medical query is issued, or session is abandoned.
Certainly, the review of information about unlikely, yet serious medical possibilities is
reasonable, when couched in the appropriate language, with appropriate caveats. From a
decision-analytic perspective, consideration of the possible presence of an unlikely
disorder can be a rational exercise, given the expected cost of delayed diagnosis and
therapy. However, the absence of clear likelihood information or the implicit relay of
inappropriate likelihoods can shift rational review to irrational anxiety. Escalations in
terms of increased focus of attention and concern may also be reasonable given sets of
symptoms combined with details about a searcher’s medical background and family
history. Unfortunately, rich sets of symptoms and detailed background information are
rarely provided to search engines given the short queries input during a session. Even if
such information was available, search engines do not have the ability to interpret and
respond with accurate assessments. Web search engines base ranking decisions on sparse
information on symptoms and on various measures of informational relevance. They are
not designed to not perform coherent diagnostic reasoning, which would require
probabilistic reasoning methods. Thus, for many single or small sets of symptoms input
to search engines, several factors may come togetherincluding the informational
linkage among common symptoms and rare disorders, the quantity of Web content on
rare disorders, the prevalence of the symptoms in healthy people, and the low probability
of rare diseases conditioned on those symptomsto foster unfounded medical anxiety.
Multiple symptoms can be input within a single search session. As we wanted to capture
as many concern + escalation/non-escalation pairs as possible, we employed a simple
method for associating escalations and non-escalations with symptoms. For each of the
symptoms defined in Table II, we took the common explanations, identified by the
medical information described earlier, and an equal number of top-ranked serious
illnesses ranked in descending order based on their per term co-occurrence statistics. We
generated via this procedure a list of common explanations and a list of the top serious
illnesses for each of the common symptoms listed in Table II.
For each session, we stored each symptom as it appeared in the logs. Each follow-on
query in the session was assessed automatically to determine whether it included a
common, benign explanation or a top-ranked serious illness for a symptom. To do this we
used the set of serious illnesses and common explanations for each of the 12 symptoms
described in Table II. Recall that these possible outcomes were associated with each
symptom based on the review of content from the U.S. National Library of Medicine’s
PubMed service and other Web-based medical resources. Serious illnesses and common
explanations were verified and expanded by one of the authors (EH).
If the session contained a symptom and an associated top-ranked serious illness or
common explanation, the concern + escalation/non-escalation pair (as well as associated
information such as time and number of Web interaction events in-between) were stored
and the symptom was temporarily retired until the next instance within the current
session or a future session. This allows us to contrast escalation from general symptoms
with sessions where the concern progresses to the more common, non-escalatory
explanation. It is worth noting that search sessions where users escalated and then de-
escalated were not common in our logs. Once a concern escalates to a more serious
condition this generally persists for the duration of the session.
We now describe some characteristics of query escalations. In particular, we target query
escalation and the effect on escalation of subject predisposition. To determine the
statistical significance of differences in features we use parametric statistical testing (p <
.05) and logarithmic transforms as appropriate.
5.1 Query Escalations
Across the logs of all 8,732 concerned subjects, we selected search sessions where the
user had submitted a query containing a symptom listed in Table II that then proceeded to
escalate either to include a serious illness or a grave concern that was indicative of an
increase in the level of severity or subject worry. From the 11,158 sessions that contained
a concern, 593 (5.3%) led to a query escalation, 831 (7.4%) resulted in a non-escalation,
and 9,734 (87.3%) led to no change. We note that the estimated escalation and non-
escalation frequencies based on our limited, focused vocabulary are a lower bound;
higher values are likely with a broader vocabulary that contains more entities and variants
for each condition. We investigated why ―no change‖ was so prevalent, and performed
detailed hand labeling of a set of 250 randomly selected no-change sessions. Figure I
displays the distribution of labels assigned to those sessions. Multiple labels were
assigned a session where appropriate. In addition, we divided labels based on whether an
escalation or non-escalation occurred. For example, 17% of no-change sessions contained
an escalation missed by our automated analysis because the escalatory condition was
unspecified for that symptom.
Figure I. Distribution of labels assigned to set of hand-labeled no-change sessions.
Unspecified
relationship
between serious
condition and
symptom
17%
Serious
condition
precedes
symptom in
session
8%
Serious
condition
and symptom
in same query
6%
Unspecified
relationship
between
non-serious
condition and
symptom
11%
Non-serious
condition and
symptom in
same query
4%
Non-serious
condition
precedes
symptom in
session
3%
Multiple repeat or
diagnostic queries
16%
Named reference
to condition (e.g.,
dengue fever)
10%
Treatment of
symptom
9%
Medical
research
6%
Other (e.g., topic
change, negation,
non-medical)
10%
In Figure I, we show that many no-change sessions are explained by: (i) unspecified
relationships between serious/non-serious condition and the symptom (28%);2 (ii) the
symptom appearing after the serious/non-serious condition in the session (11%), or; (iii)
the symptom appearing in the same query as the serious/non-serious condition (10%).3
These three types of escalation or non-escalation were not recognized by our automated
analysis. The remaining no-change sessions (51%) had no escalation or non-escalation,
and comprised: (i) multiple repeat or diagnostic queries (16%); (ii) an initial named
reference to a particular condition (e.g., dengue fever) and then searches for more
information about that condition (10%); (iii) searches for treatment options for a
symptom (9%), and; (iv) medical research for journals and specific studies (6%). The
other no-change sessions (10%) included topic shifts following symptom input, searches
for drug names and symptoms associated with them, negations (e.g., ―not fever‖), and
non-medical sessions that had not been filtered out by our automated tools.
Of the sessions in our logs that led to a query escalation, 91.6% were caused by the
inclusion of the name of a serious illness in the query and 8.4% by the inclusion of an
accelerating or grave concern in the query (e.g., the query ―chest pain‖ escalating to
―severe chest pain‖). Out of the 700 subjects for whom we observed an escalation or non-
escalation, 230 subjects (32.9%) escalated and 491 (70.1%) did not escalate. There was
an overlap of only 21 subjects between these two groups, suggesting that concerned
subjects may be somewhat predisposed to escalate or not escalate, something we study in
more detail later in this article.
5.1.1 Session. We were interested in whether there were differences in
interactions by searchers during sessions where escalation occurred, versus where users
tended towards a common explanation, or when there was no significant change in the
semantics of their medical queries in the session containing the medical symptom. In
Table V, we present summary statistics on the sessions where at least one of three types
of event occurs. In the last row of the table we also include the proportion of medical
pages from trusted source (i.e., .edu, .gov, and .org domains), used as a proxy for the
reliability/complexity of Web content viewed.
2 For example, a rash may be indicative of meningitis, but meningitis was not one of the possible
escalations or common explanations for rash considered in our automated log analysis.
3 Note that 31.4% of no-change sessions showed escalation and 17.9% of sessions had non-
escalation. If we assume that these percentages provide approximate likelihoods for all non-
change sessions and include the automated log analysis, the percentage of sessions with
escalations/non-escalations is 32.7%/25.3% respectively.
Table V. Summary Statistics (per search session).
Measure
Escalation
Non-
escalation
No change
M
SD
M
SD
M
SD
Duration (seconds)
3801
2806
3412
2633
2806
2391
Number of query iterations
24.8
18.5
16.6
14.5
10.3
9.6
Number of pages
29.2
16.3
16.1
13.4
13.6
12.2
Number of unique domains
9.8
7.2
6.4
6.3
4.6
4.8
Percentage of medical pages
39.1
23.8
39.2
25.2
18.4
16.5
Percentage of medical pages from
trusted sources
25.1
20.7
19.1
18.3
10.1
8.7
We performed a one-way independent measures analysis of variance (ANOVA) to
determine whether the observed differences between sessions were significant. To reduce
the number of Type I errors, i.e., rejecting null hypotheses that were true, we set the alpha
level (α) to .008 i.e., .05 divided by 6, the number of tests performed. Our findings
suggest that sessions that escalate last longer (in terms of time and pages visited), contain
more queries, and include visits to more unique domains and trusted sources (all F(2,
11155) ≥ 7.27, all p ≤ .007; Tukey’s post-hoc tests: all p ≤ .005, . It appears that
the exposure to additional Web content, different perspectives from multiple domains,
and perhaps detailed information from trusted sources may contribute to the likelihood
that escalation will occur. In addition, it is worth noting that some escalating users
engaged in extremely long sessions lasting over three hours. Visual inspection of
aggregated representations of these concerned subjects’ search sessions ruled out session
demarcation errors in our log parsing in all but two cases; those cases were removed from
the data prior to analysis. It is also worth noting that sessions with any large change in
health-related semantics (i.e., an escalation or non-escalation) were not only longer than
those with no change but included around twice as many medical pages, and of those
pages, twice as many came from government or academic sources. The volume and type
of medical information viewed may also contribute to escalation or non-escalation
likelihood.
5.1.2 Distance Between Symptom and Escalation / Non-escalation. We explored
the distance between the submission of a query containing the initial symptoms and the
escalation or non-escalation occurring within a single session. A better understanding of
the onset of escalations may allow us to predict when they are going to occur and to build
tools that can adapt interfaces or ranking algorithms to minimize the likelihood of
escalation given common symptoms. We measured distance in three ways:
Time in seconds: The number of seconds between the query for the symptom and the
escalation or non-escalation.
Number of queries: The number of queries between the symptom and the escalation
or non-escalation.
Number of page views: The number of non-search pages viewed between the
submission of the query containing the initial symptom and the escalation or non-
escalation.
To study escalation, we examined sessions containing at least one escalatory query and
measured distance from the first symptom-related query to the first escalation. To
characterize non-escalation, we examined sessions containing only symptoms or non-
escalations, and measured the distance from the first symptom-related query to first non-
escalation. Table VI shows the average and the standard deviation for the distances of
each of these three measures between the symptom and the escalation or non-escalation.
Table VI. Escalation/Non-escalation Distances.
Distance Measure
Escalation
Non-escalation
M
SD
M
SD
Time in seconds
132.7
140.2
92.3
73.7
Number of queries
2.3
2.2
1.2
1.1
Number of page views
2.2
1.9
1.1
1.0
As can be seen from Table VI, distances between symptom and serious illness or grave
concern (escalation) are larger than between symptom and non-serious common
explanation (non-escalation), as verified with independent measures t-tests (all t(1422) ≥
2.58, all p .01). In the additional time between query and escalation, users appear to be
submitting more queries and viewing more pages than between query and non-escalation.
The high variance of each of the distance measures suggested that they may not be evenly
distributed over time. In Figures II, III, and IV we illustrate graphically the frequencies of
actions indicative of escalations and non-escalations as functions of the variables shown
in Table VI. Times between query and escalation/non-escalation are considered at 30
second intervals with a maximum timeout of 600 seconds. Since non-escalations
outnumber escalations, the lines depict a percentage of the total number of escalations or
non-escalations, rather than the actual frequency values.
Figure II. Temporal distance from initial input of symptom (within session).
0
10
20
30
40
50
60
70
30
60
90
120
150
180
210
240
270
300
330
360
390
420
450
480
510
540
570
600
% of all escalation or non-escalation
Time from symptom (secs.)
Escalation
Non-escalation
Figure III. Query distance from initial input of symptom (within session).
Figure IV. Navigational distance from initial input of symptom (within session).
The graphs show that: (i) escalations occur more gradually throughout the search sessions
than non-escalations, (ii) escalations occur less frequently immediately after the first
follow-on query, and (iii) escalations occur more frequently for a few non-search pages
after the query and then tail off. These observations might be explained by a domain
sampling model (Nunnally, 1967) where a sufficient pool of available evidence of Web
content about a symptom of interest is collected by users in return for some assumed
reasonable allocation of search and browsing effort. The pool of data is considered to be a
sufficiently representative sample of all relevant data on the Web for deliberating about
the explanation for the symptoms. In the context of such a sampling model, we might
expect the observations displayed in Figures II, III, and IV, if each page visited in pool of
evidence has a probability of causing an escalation via containing information about a
serious explanation; the probability of an escalation occurring would increase with
multiple views within a bound of the evidence set.
5.2 Query Escalations and Subject Predisposition
In addition to viewing pages containing the names of serious illnesses, some users may
simply be predisposed to experience escalations in their medical searches. For each of the
0
10
20
30
40
50
60
70
1
2
3
4
5
6
7
8
9
10
% of all escalation or non-escalation
Query iterations from symptom
0
10
20
30
40
50
60
70
1
2
3
4
5
6
7
8
9
10
% of all escalation or non-escalation
Non-search engine pages viewed from symptom
Escalation
Non-escalation
Escalation
Non-escalation
700 subjects that experienced an escalation or a non-escalation we sought to determine
whether there were differences in the medical searching behavior or source selection of
these users. In particular we studied behaviors relating to the average number of medical
queries per day, the proportion of overall pages viewed that were medical, the average
number of medical page views per day, the number of unique symptoms, and the
proportion of medical pages viewed that came from trusted medical sources (e.g., .edu,
.gov, and .org). In Table VII, we present the average values for each of these features for
concerned subjects with query escalations, subjects with query non-escalations, and those
subjects that searched for a medical symptom but did not experience any increase or
noticeable change in the nature of information sought (i.e., no change). Again, these
values are a lower bound based on the ability to detect medical query instances given the
partial list of medical terminology used.
Table VII. Interaction Features from Subject Groups.
Measure
Escalators
Non-
escalators
No change
M
SD
M
SD
M
SD
Num. of medical queries per day
0.6
0.7
0.4
0.7
0.2
0.4
Num. of unique symptoms
1.8
1.5
1.4
0.7
1.1
1.0
Num. of medical page views/day
0.6
0.7
0.4
0.5
0.2
0.3
% of all pages medical
5.5
5.7
5.1
5.2
2.3
2.1
% medical pages from trusted
47.9
27.9
40.7
28.0
36.9
33.6
There were differences in the medical search behavior of all three user groups, across all
features, suggesting that subjects could be in some way predisposed to escalation (one-
way independent measures ANOVA: F(2,11155) 7.55, all p .006,  In
addition, for the escalators and non-escalators, we performed a multiple regression
analysis with the five features listed in Table VII as independent variables and the
proportion of sessions containing an escalation or non-escalation as the dependent
variable. The multiple correlation coefficients for the escalators and the non-escalators
are .32 and .24 respectively, both of which significantly differ from zero (Escalators:
F(5,224) = 5.22, p < .001; Non-escalators: F(5,485) = 5.93, p < .001). Although the
correlation coefficients are in the low-moderate range, they do suggest that it may be
possible to infer escalation likelihood given only information about searchers’ medical
Web search interaction history, especially for subjects who escalate. Details of the
frequency or content of related user activities beyond Web search behavior (e.g.,
interactions with physicians, perusal of medical textbooks or medical articles in the
popular press, discussions on symptoms and conditions with other patients with similar or
related ailments), may help us estimate escalation likelihood even more reliably. This
also suggests that factors beyond the exposure to medical information in Web search
resultsin this instance a user’s predisposition to escalatecan influence the likelihood
that an escalation can occur. These findings highlight the complexity of this challenge
that systems trying to alleviate inappropriate medical anxiety face. However, the findings
do suggest that in light of limited information about a user’s interaction history, we may
be able to compute an escalation likelihood that could be factored into tailored ranking
algorithms for users. In the next section, we study the persistence of health concerns.
6. PERSISTENCE OF HEALTH CONCERNS
One way in which psychological disorders, such as different forms of anxiety and
depression, are diagnosed is through characterization as impairing functioning (i.e., how
psychological symptoms interfere with peoples’ normal daily activities). The Diagnostic
and Statistical Manual of Mental Disorders introduced earlier provides guidelines to
psychologists and psychiatrists for classifying such mental disorders. The manual states
that a person must have a set of characterizing symptoms that are significant enough to
cause impairment for them to have a disorder. The persistence of unfounded medical
concerns can be debilitating and lead to a reduced quality of life for those afflicted.
Persistence of medical anxiety has been studied previously [Asmundson et al. 2001] but
not in the context of Web search and not in particular following inappropriate escalations
such as those described in the previous section.
In addition to characterizing medical escalations as they occur, we also wished to
characterize the extent to which anxieties persist across multiple search sessions,
potentially spanning multiple days, weeks, or months, and the extent to which they
interrupt users’ search activities, based on logs of healthcare-related querying and post-
query browsing history. Prior to doing so, we determined the prevalence of persistence
and interruption related to medical escalations among our survey respondents. We asked
those who had had experienced medical escalation (per the question in the last row of
Table IV) to respond to three attitude statements about the persistence and impact of
searches for serious illnesses following an initial escalation. A summary of the findings is
presented in Table VIII.
Table VIII. Responses to Survey Questions Regarding Persistence and Interruption.
Attitude statement
Responses (N=472)
Following an initial escalation from querying for symptom / basic
medical condition to querying for a serious illness, your queries for
that serious illness persist over weeks, months, or years
Always
0.4%
Often
6.7%
Occasionally
25.8%
Rarely
39.8%
Never
27.3%
Following an initial escalation from querying for a symptom / basic
medical condition to querying for a serious illness interrupted your
online activities
Always
0.2%
Often
3.6%
Occasionally
19.3%
Rarely
35.0%
Never
41.9%
Following an initial escalation from querying for a medical symptom /
basic medical condition to querying for a serious illness interrupted
your other activities
Always
0.2%
Often
3.0%
Occasionally
20.3%
Rarely
36.9%
Never
39.6%
The responses summarized in Table VIII suggest that seven out of ten respondents
searched for serious illnesses post escalation at all (6-7% of respondents did so
frequently). The online and other activities of around six out of ten survey respondents
were affected at least once by interruptions related to prior medical escalations (3-4% of
respondents were affected frequently). Post-escalation persistence and interruption
affected a significant number of our respondents. We investigated these issues further in
our log-based study.
In this section, we extend our log-based analysis beyond a single search session to focus
on the reoccurrence of medical conditions over extended periods of time such as weeks
and months, and interruptions in other searches and activities that are caused by an urge
to perform medical searches about a worrying disorder following a detected escalation.
Re-occurrence and associated interruption implies significant anxiety and cost that might
be overcome with enhanced awareness and technological innovation.
6.1 Re-occurrence
We seek to understand how escalations can lead to persistent concerns over longer
periods of time. Beginning with the first occurrence of an escalation, via noting terms
representing a serious illness, we determined with an automated procedure how often the
serious illnesses associated with that concern reappeared until the end of the interaction
logs for each subject. The concern may continue to reoccur beyond the end of our log
sample, but we have sufficient information to characterize its onset and its reoccurrence
to a reasonable level. We did the same for non-escalations and symptoms. Again, privacy
considerations were central. We tracked no other aspects of subjects’ interaction
behavior, only whether the condition reoccurred again in queries issued. We envision
that search services could be personalized to provide information relevant to a recurring
conditionor anxiety about a condition, based on search history, given the appropriate
addressing of privacy concerns.
In total, there were 2,542 re-occurrence events in our logs, affecting 1,177 subjects
(13.5%). Re-occurrence seems to form an important part of escalatory behavior. Of this
total, 1,290 (50.8%) were from symptom reoccurrences (i.e., searching for the same
symptom across multiple sessions), 580 (22.8%) from the reoccurrence of querying on
serious illnesses (note that 65% of these re-occurrences were for ―cancer‖), and 672
(26.4%) from the reoccurrence of common explanations. In Table IX, we show the
number of search sessions and the number days between the re-occurrence events for
each of these three types.
Table IX. Distance Between Medical Re-occurrences.
Distance measure
Symptoms
Serious illnesses
Common
explanations
M
SD
M
SD
M
SD
Session
22.8
29.2
20.5
20.6
12.6
17.0
Day
18.9
23.3
19.0
25.6
11.4
10.9
Given the durations shown in Table IX, it appears that concern about medical conditions
can persist over multiple sessions and multiple days. The significance of the difference in
reoccurrence frequencies between serious illnesses and common explanations may be
because non-serious ailments such as eyestrain or migraine can be related to multiple
more serious conditions, so are likely to occur as queries more frequently (one-way
independent measures ANOVA: Session: F (2,2540) = 3.92, p = .02, Tukey’s post-hoc
test: p = .02; Day: F (2, 2540) = 4.61, p = .01; Tukey’s post-hoc test: p = .01, .
We noted a high degree of variance in each of these metrics when broken out by groups
of subjects or condition. As suggested earlier in the article, it seems that re-occurrence is
staccato in nature, with periods of relative calm followed by intense medical searching;
these may align with periods of medical anxiety, although more research with human
subjects is required to test this.
6.2 Persistent Anxieties as Interruptions
Medical conditions can profoundly affect the daily activities of those concerned. To be
diagnosed with a disorder such as hypochondria individuals need to not only demonstrate
the symptoms of medical anxiety but also that their concerns impair their normal daily
activities. Interruption has been studied in detail in the human computer interaction and
psychology literature [Ovsiankina 1928; Czerwinski et al. 2004; Ibqal and Horvitz 2007].
However, these studies have focused on experimental interruptions or on in situ
investigations of the costs of alerts from electronic communications and telephones, and
on self-interruptions to switch among work tasks. We shall define an interruption
instance in our study as a situation where:
(i) We have already observed a user escalating from a common condition to a more
serious illness at some point in their search history;
(ii) The same user engages in another session at some future time (later that hour, later
that day, the next day, the next week, etc.) that starts with at least one non-healthcare
query;
(iii) That same session evolves to then contain healthcare-related queries, and;
(iv) Those same healthcare-related queries describe the same serious illness as the
escalation in (i).
In total, there were 885 instances of interruption in our logs, affecting 480 concerned
subjects (5.5%). The validity of these interruptions was verified by visual inspection of a
sampling of the sessions by one of the authors. Interruption mainly arose from searching
for symptoms repeatedly across multiple medical sessions (62.7%), rather than serious
illnesses or common explanations. Queries related to ―cancer‖ and ―pregnancy‖
interrupted users most for escalations and non-escalations respectively. For some users
interruption represented a potentially significant hindrance on their search activities, with
some medical concerns interrupting over 15% of their search sessions. Although there
were only a small fraction of concerned subjects (less than 20) for which the situation
was as serious, their presence at all highlights the opportunity to modify search engines
and content so as to help people to manage their medical concerns more effectively.
7. DISCUSSION
We have investigated medical search behavior and focused on the potential for Web
search and navigation to lead to escalations of medical concerns. Via a survey and large-
scale log analyses, we found evidence that such escalations can occur and may lead to
both short- and longer-term anxieties and unnecessary costs in time, distraction, and
engagements with medical professionals. We believe that our studies are a call for
additional research on the use of online search and retrieval for self diagnosis. Our initial
explorations underscore the potential value of focusing attention on designs and
mechanisms to address the challenges identified. In this section, we discuss pertinent
results and offer recommendations for the design of information-retrieval systems to
support more effective medical searching and a reduction of cyberchondria.
7.1 Judgment Biases
Beyond potential problems with the quality of medical content described earlier, we
believe that cyberchondria is based more centrally on intrinsic problems with the implicit
use of Web search as a diagnostic engine. In such a usage, disorders described in a
ranked list of results, following a query containing symptoms, may be coarsely
interpreted by users as diagnostic entities sorted by likelihood. To test the validity of this
claim we asked our survey respondents about their interpretation of health-related Web
search results. A summary of responses to relevant questions is included in the first two
rows of Table X. The last two rows contain responses to questions about respondent
engagement with health professionals.
The survey responses summarized in the first two rows of Table X show that three in four
respondents have at least once interpreted the ranking of Web search results as indicating
the likelihood of the illnesses, with links to pages describing more likely diseases
appearing higher up on the result page. Just under one quarter of all respondents
interpreted search results in this way frequently, and approximately the same proportion
had used Web search engines as though Web search functioned as a medical expert
system. The last two rows of Table X show that one in five survey respondents were
convinced to seek medical attention based on the review of online medical content.
However, only one in four of the respondents that sought medical attention had a medical
condition that warranted them doing so.
Table X. Responses to Survey Questions Regarding Searches for Diagnoses.
Questions
Responses
If your queries contain medical symptoms, how often do you consider the
ranking of Web search results as indicating the likelihood of the illnesses,
with more likely diseases appearing higher up on the result page(s)?
(N=515)
Always
2.7%
Often
20.8%
Occasionally
27.4%
Rarely
26.8%
Never
22.3%
Have you ever used Web search as a medical expert system where you
input symptoms and expect to review possible diseases ranked by
likelihood? (N=515)
Yes
24.5%
No
75.5%
Do you believe you have been in the situation where Web content “put
you over the threshold” for scheduling an appointment with a health
professional, when you would likely have not sought professional
medical attention if you had not reviewed Web content? (N=515)
Yes
23.7%
No
76.3%
Did the appointment reassure you that your worries were not justified?
(N=122)
Yes
73.0%
No
27.0%
These results demonstrate the effect of Web content on non-Web behaviors and show that
a significant portion of the user population are using search results as a proxy for what
physicians refer to as the differential diagnosisthe list of diseases under consideration
ranked by their corresponding likelihoods, given a patient’s history and symptoms. Such
usage of Web search as diagnostic inference is natural for people, yet is not typically
considered in the design and optimization of general-purpose ranking algorithms. For
example, ranking methods employed by search services may take user clicks and dwells
on Web pages as an indication that the page is relevant to the adjacent query [Agichtein
et al. 2006]. If the ―worried well‖ are more drawn to content about potentially serious
concerns than about more likely but less worrisome explanations, the ranking of Web
pages on rare but serious disorders could be skewed towards the top of ranked lists. Such
a bias could be an important source of erroneous but self-reinforcing feedback; studies
have demonstrated that users tend to click on the top-ranked results of Web pages
[Joachims et al. 2005]. Thus, anxious click-throughs on items appearing on search result
pages, in response to queries about common symptoms, may lead to ranking refinements
that push rare but concerning health problems increasingly higher in the list over time.
Beyond self-sustaining anxiety-driven click-throughs, other core biases may play an
active role with the use of the Web search as medical diagnosis. Cognitive psychologists
who study human judgment and decision making have presented evidence that people
often employ heuristics in assessing the likelihoods of events that can lead to biases in
judgment, as compared with normative probabilistic updating [Tversky and Kahneman
1974]. We believe that previously studied heuristics and biases of human judgment likely
play a significant role in cyberchondria. Beyond their influence on people pursuing
medical information on the Web, the biases likely also directly influence the indexing and
ranking of medical content, as the search methodologies are not designed to perform
coherent probabilistic updating. We focus on two well-studied biases: (i) base-rate
neglectthe failure to adequately consider background or prior probabilities of events
and (ii) the availability biasthe influence of recent exposure to events on a subject’s
assessments of probabilities of the events.
Base-rate neglect has been detailed in the literature on the psychology of judgment
[Kahneman et al. 1982], and, more specifically, in the literature on medical decision
making [Elstein et al. 1978]. Base-rate neglect has been invoked to explain the failure of
people to accurately take the low prior probabilities of rare events into consideration in
reasoning about outcomes. It is critical, in effective medical diagnosis from symptoms, to
take into account both the prior probability of illnesses and the probabilistic updates
provided by sets of observed symptoms. For rare diseases, even multiple evocative
symptoms may not raise the likelihood of an illness enough to be a significant concern.
Even medical experts are not immune to overestimating the likelihood of rare disorders
because of base-rate neglect, or more generally, because of an inadequate folding in of
the small prior probabilities of rare disorders. Base-rate neglect likely plays a central role
in self-diagnosis by laypeople engaged in search and navigation on the Web.
Beyond the failure by people and search engines to integrate a consideration of prior
probabilities, cyberchondria may be additionally stimulated by the influence of the
quantity of content about rare disorders in results and browsing on the cognitive
availability of the disorders. Psychologists of judgment and decision making have
provided evidence that the density and recency of events makes them more ―available‖ to
people when they reflect about likelihoods and that this increased availability leads
people to expect that the events will occur with higher probabilities. The reliance of
people on the cognitive availability of events in the process of generating estimates of
probability has been referred to as the availability heuristic within the psychology of
judgment and decision making [Tversky and Kahneman 1974]. Studies have
demonstrated how subjects’ probability assessments can be manipulated by changing the
recency and density of events that they are exposed to. On the Web, larger amounts of
indexed content about serious disorders can make these disorders more available to both
search engines and to people who search and browse content. Similar or larger quantities
of content may be devoted to rare, yet serious illnesses compared to content on more
common explanations for symptoms. For example, headaches are far more often caused
by caffeine withdrawal than by cerebral hemorrhage or brain tumors, but there is a great
deal written about the link between headaches and the more serious, albeit rare ailments.
Although it may be reasonable for more attention, and thus, literature, to be devoted to
discussion of serious but rare disorders than to common, benign causes of symptoms, the
abundance of content on rare diseases can lead search engines and people astray.
In summary, base-rate neglect and availability bias are well-known biases in judgment
associated with the failure to integrate the relevance of low prior probabilities and the
erroneous linking of the availability of information to likelihood of events likely play a
role in cyberchondria. These phenomena influence people directly, but also can act on
search engines themselves, leading to the generation of search result lists that contain low
probability but highly concerning items near the top of results pages. In addition, click-
through and dwell on serious disorders may lead to self-sustaining boosts in the ranking
of the rare but troubling disorders.
Although query escalations have been our primary focus, it is also worth considering
post-query navigation to Websites containing serious explanations and escalatory
terminology as sources of escalatory evidence. To establish the extent to which
interaction with Websites could reveal medical escalations we asked the 198 survey
respondents (38.4%) who had experienced an increase in anxiety from searching health
information online, to provide more information about the source of their anxiety. For
those who suggested that the source was content-related, we asked for more information
about the nature of the content. The findings are summarized below in Table XI.
Table XI. Sources of Health-Related Anxiety and Contribution of Content Features.
Questions
Responses (N=198)
What was your anxiety related to?
(multiple responses permitted)
The content of pages visited from a result click
70.7%
The content of the Web search result pages (e.g.,
page titles, captions, URLs)
31.8%
The content of pages visited on the browse trail
following a result click
27.8%
The rank order of the returned pages
11.1%
Other
4.5%
What was it about the content of
those pages that contributed to
your anxiety?
(multiple responses permitted)
Mention of serious explanations
64.1%
Presence of escalatory terminology (e.g., grave,
fatal, life-threatening, serious)
41.4%
Mention of serious explanations and no (or very
few) non-serious explanations
36.4%
Reliability of the source
28.3%
Presence of complex medical terminology
18.7%
Other
10.1%
The responses show that search engine result pages, the contents of the pages visited
directly from the result pages, and pages visited thereafter, may all contribute to health-
related anxiety to different extents. On those pages, it was the mention of serious
explanations and escalatory terminology that contributed most to respondents’ distress.
Interaction with pages containing serious explanations or escalatory terminology could
therefore serve as a proxy for medical escalation if no further query evidence was
available, or to add support to query-garnered evidence if it was available. So-called
navigational escalations could involve users migrating from queries about common
symptoms to: (i) pages with text on related serious explanations, (ii) a more conservative
estimate of (i) where pages must have text on related serious explanations and no mention
of related non-serious illnesses, and (iii) pages whose URL contains a serious illness
name (e.g., www.cancer.org). However, more research is needed on the nature of pages
that reveal medical escalation versus, say, those that merely list possible causes for a
medical condition. Once we have a better understanding of such implicit evidence we can
incorporate navigational escalations into our characterization of cyberchondria and
predictive models,\ such as those described in the next section.
7.2 Design Recommendations and Future Opportunities
A more complete understanding of potential biases and of characteristics associated with
how people search for common symptoms can lead to the design of search systems that
can reduce user distress and support more informed medical education and decision
making. In one area of innovation, medical searches may be recognized and specially
handled. Specialized ranking algorithms have been studied for medical domains (e.g.,
[Luo et al. 2007]) and for classifying queries as health related. Algorithms tailored to the
medical domain may be able to handle longer search queries (including natural language
descriptions of symptoms with little medical terminology), with the aim of returning
comprehensive lists of relevant search results. Comprehensiveness is important since
patients or physicians do not want to miss important documents that may contain useful
diagnosis or treatment information.
We are particularly interested in techniques that promise to reduce the likelihood that
users will become inappropriately concerned. Methods for reducing cyberchondria
include developing techniques for recognizing health-related queries, and for considering
such evidence as the nature and timing of the review of medical content, as in Tables VI
and VII. Opportunities for addressing cyberchondria include the following:
Detection of diagnostic intent: There is an opportunity to detect if a searcher is employing
Web search to perform diagnosis, much as they might use a medical expert system
[Heckerman et al. 1992] if such a system were availablewhere symptoms are input and
a list of a reasonable explanations ranked by their likelihood is reviewed. We are
pursuing the creation of classifiers that indicate when a user is likely using Web search as
a diagnostic system. As shown in the survey findings reported in Table X and our log
analysis, this is a common user activity. Estimates of user’s predisposition to escalating
might be obtained through log analyses of prior medical escalations. Such information
might be used to predict or detect escalations, and then action might be taken to reduce
the likelihood of unnecessary anxiety. For example, given detection of ―diagnostic
intent, search services could provide a list of diseases sorted by likelihood, along with
assistance and caveats in interpreting the results. There is opportunity for online services
to forward users to diagnostic systems or to seamlessly shift their operation to an explicit
probabilistic diagnostic modality, including the use of methods that engage users in an
active dialog that is driven by computations of the expected value of acquiring different
types of information. Online services that assist people with interpreting symptoms would
not necessarily need to serve as frank online diagnostic systems. There is great room for
enhancing online search and content to recognize and respond appropriately when people
seek diagnostic support for common symptoms and sets of symptoms. As an example, a
search service might display above search results the overall incidence rates of
concerning entities, as well as incidence rates of related benign explanations linked to
detected symptoms. Rates conditioned on different age groups and on common symptoms
linked with the disorders, could also be included. Given our finding that ―trusted‖ sources
are viewed in sessions associated with escalations more than sessions without escalations,
information gleaned largely from these sources could be presented in a way that is more
understandable to non-expert users. Such an approach may reduce the potential for
escalation by providing analyses similar to the kind of higher quality information seen
with domain search versus Web search, as captured in Table I.
Providing expertise: Table XI showed results of survey questions on sources of health-
related anxiety. The results highlight how unreliability of Web sources and the content of
Web search results contributes to the heightened anxiety of around three in ten survey
respondents. Search engine engineers as well as authors of sites with information on rare,
serious concerns should remain aware that searches on common symptoms and concerns
may be entry points to content on serious disorders. Authors can provide discussion that
about the likelihoods of more common, less concerning illnesses and links to discussions
of the more common, benign explanations. To improve the reliability of the information
present in search results, expert sources of medical information might be consulted by
search providers in automated and handcrafted analyses. This could ensure that frequent
searches about medical symptomatology are linked with reasonable lists of results that
are unlikely to induce unfounded concerns about more serious illnesses. The labor costs
required to create these lists for a small set of the most popular queries would be small
compared to the possible benefit to users in feeling assured that the results were reliable.
More generally, insightful flowcharts or decision trees displayed early on in the pursuit of
an online diagnosis may be of great help to people who might otherwise become
needlessly anxious. More details can be provided to searchers about the potentially low
incidence rates when factors such as age, gender, and other evidence that is easy to
observe. Symptoms and signs can be described in more detail and in terms that searchers
can understand, especially when subtleties of a presentation are important in
distinguishing unconcerning versus concerning variants of symptoms. We understand
that the latter can be very difficult and that subtleties are sometimes not even appreciated
by physicians outside of specialties. For example, surgeons with a great deal of
experience with appendicitis may be more skillful than an emergency department
physician at interpreting abdominal pain; a generalists interpretation of ―rebound
tenderness‖ may need to be confirmed by a consulting surgeon.
Debiasing search results and searchers: The findings reported in Section 3 demonstrated
the potential the Web offers for escalation. In addition, the survey findings reported in
Table X and Table XI shows that the rank order of search results made one in ten
respondents more anxious. Biases in medical information on the Web might be studied
directly and methods, employing reliable human and digitally encoded medical expertise,
could be used to de-bias results. For example, the salience of a serious disorder may lead
to more content being generated and available about the serious concern, and, thus, to
higher-ranked and more available results when common symptoms are explored. If such
availability is interpreted as probabilities, in line with studies by psychologists of how
people may use and misuse the availability heuristic, searchers may be misled about
likelihoods. Such bias might be handled with insightful filtering and de-biasing analysis.
We note that analogous biases, based in the mismatch between the quantities of content
available on the web and the likelihoods of different explanations, and also the related
misinterpretation of page relevance as likelihood, may pose similar problems for search
and retrieval in non-medical areas.
Evaluating search results: Frequent and stereotypical escalations and related behaviors
might be detected as heralds for potential problems with search results. Features such as
those used in the analysis presented in this article (e.g., Table V and Table IX) could
form the basis of detection algorithms developed for this purpose. Queries flagged as
candidates for escalation could be assigned to a domain expert for the creation of a
handcrafted list as described previously. Web pages frequently present in escalatory
events could be down-weighted in the ranking algorithm or marked for subsequent expert
review.
Click-through tuning: We mentioned that standard application of rank optimization
methods, that take as input click-through and dwell data as indications of appropriate and
inappropriate result lists, might lead to special problems if the worried well were clicking
on results that described less likely but more serious concerns associated with symptoms.
Such methods might need to be adjusted to handle medical queries in a special manner,
such that the escalatory potential of a page is also considered alongside interaction
features such as the click-through frequency and dwell time when ranking search results.
In all these cases, tailoring search support offered by a system to a particular user, or
group of users, based on their estimated escalation likelihood (e.g., some representation
of their level of predisposition) may help reduce instances of cyberchondria. There is also
opportunity to develop methods for detecting anxiety based on escalations and frank
hypochrondriases based on short-term interactions such user click-through or, where
privacy concerns have been addressed, over longer-term interactions. We are actively
working toward the goal of automatically detecting cyberchondria using Bayesian
inference networks and machine learning algorithms, with the aim of reducing the
number of users affected by the phenomenon using alerting mechanisms in Web browser
plug-ins or on search engine result pages. We are also investigating the use of query
chains (similar to [Radlinski and Joachims 2005]) to study series of queries and
escalations/non-escalations rather than individual instances as described in this article.
The problems identified, lessons learned, and solutions for enhancing medical search
described so far in this section will likely be relevant to other specialty searches where
concerns are likely to escalate. For example, in auto repair an engine noise may relate to a
faulty oil pump or a more serious, but also more unlikely, cylinder head problem. Beyond
the application of caveats and ideas learned in healthcare search to domains with
analogous notions of an escalation, the challenges and opportunities for enhancements via
special indexing, analysis, design, and user interfaces may more generally point to the
need for special handling of specialty searches. This recommendation differs from the
trend of indexing and ranking of results with methodologies that are applied universally
across domains.
An advantage of the methodology we employed in our study is the scale that is available
via interaction logs. The inclusion of the survey helped to bolster some of our claims and
provide ideas for future research. However, we feel that studies with groups of live
subjects doing health searches would also be valuable. An aspect of this research that will
form part of future work is to perform user studies with actual patients to deepen our
understanding of medical escalation and the costs involved in such escalation (e.g.,
resources expended and unnecessary interactions with healthcare providers).
8. CONCLUSIONS
We have presented a log-based study of medical Web-search behavior. The study carves
out a nascent set of research challenges for the IR community centered around
cyberchondria, focused on the unfounded escalation of medical concerns. We analyzed
the escalation of concerns about common symptoms into queries on serious, rare illnesses
within a session. We conducted a large-scale survey to support our claims and highlight
opportunities for future work. We found that escalation of medical concerns is potentially
related to the amount and distribution of medical content viewed by users, the presence of
escalatory terminology in pages visited, and a user’s predisposition to escalate or seek
more reasonable explanations for ailments. We also demonstrated that the persistence of
concerns following an escalation and the effect that such ongoing concerns could have on
interrupting users’ activities over a prolonged period of time. We discussed several
potential factors contributing to the rise of inappropriate concern, including biases of
judgment studied in cognitive psychology. Beyond affecting people directly, the biases of
availability and base-rate neglect may be directly influencing the ranking of results by
search engines. Finally, we discussed several methods and designs that hold opportunity
for improving the search and navigation experience for health seekers. There are
algorithmic challenges in incorporating likelihood estimates and de-biasing search
results, evaluation challenges in determining the probability that a set of search results
will lead to unfounded escalation, and interface challenges in when and how we should
alert users that an escalation is imminent or has already occurred. Search engine
architects have a responsibility to ensure that searchers do not experience unnecessary
concern generated by the definitions of relevance and the ranking algorithms their
engines use. They must be cognizant of the potential challenges of cyberchondria, and
focus on serving medical search results that are reliable, complete, and timely, as well as
topically relevant. Directly tackling cyberchondria is an opportunity to leverage readily
available expertise in the information-retrieval and medical informatics communities in
areas such as document ranking, user modeling, machine learning, and user interface
design for the direct benefit of the many people turning to the Web to interpret common
medical symptoms.
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... Even though online health information seeking brings us major potential benefits, it sometimes leads to unexpected costs [26,40]. For example, White and Horvitz (2009) found that web search engines have the potential for people to escalate their health concerns about common symptoms [41]. In addition, Vismara et al. (2021) found that health information seeking and cyberchondria (heightened attention to serious medical concerns based on the searching information on the Web) would lead to higher psychological stress during the COVID-19 pandemic [24]. ...
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... Health information search was expected to relieve people's psychological stress; however, it sometimes led to a higher level of anxiety. Especially for people who have little or no medical training, searching online would increase their health anxiety and even escalate their medical concerns [41]. It called for more understanding and attention to health information searching behavior. ...
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To comprehend the nature, implications, risks and consequences of the events of the COVID-19 crisis, individuals largely relied on various online information sources. The features of online information exchange (e.g., conducted on a massive scale, with an abundance of information and unverified sources) led to various behavioral and psychological responses that are not fully understood. This study therefore investigated the relationship between exposure to online information sources and how individuals sought, forwarded, and provided COVID-19 related information. Anchored in the stimulus-organism-response model, cognitive load theory, and the theory of fear appeal, this study examined the link between the online consumption of COVID-19-related information and psychological and behavioral responses. In the theory development process, we hypothesized the moderating role of levels of fear. The research model included six hypotheses and was empirically verified on self-reported data (N = 425), which was collected in early 2021. The results indicate that continuous exposure to online information sources led to perceived information overload, which further heightened the psychological state of cyberchondria. Moreover, the act of seeking and providing COVID-19 information was significantly predicted by perceived cyberchondria. The results also suggest that higher levels of fear led to increased levels of seeking and providing COVID-19-related information. The theoretical and practical implications of these findings are presented, along with promising areas for future research.
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Aim of the study The purpose of the study is to investigate the cyberchondria attitudes, health anxiety and their correlation with each other in Fibromyalgia Syndrome (FMS) patients. Subject or material and methods 68 patients diagnosed with FMS according to the American College of Rheumatology (ACR) 2010 diagnostic criteria and 68 healthy individuals with similar sociodemographic characteristics and meeting the study criteria were included in the study. Sociodemographic Data Form, Cyberchondria Severity Scale (CSS), Fibromyalgia Impact Questionnaire (FIQ), and Health Anxiety Inventory-Short Version (HAI) were administered to all participants. Results The sub-dimensions of the CSS total, distress, excessiveness, reassurance, and mistrust of medical professional and the HAI body sub-dimension and total score of the patient group were found to be significantly higher than the scores of the control group (p<0.001). There is a significant positive correlation between HAI total score and FIQ score (p= 0.018) (r=.285). A positive and significant relationship was found between the CSS-total score and the HAI sub-dimensions and total score (p= 0.002, r=.377). Discussion Our study shows that health anxiety and cyberchondria are high in patients with FMS and that disease severity and health anxiety increase in direct proportion. Due to these results, it may be wise to periodically check the cyberchondria and health anxiety levels of these patients and to include psychiatric view in the treatment of the patients. Conclusions Doctors can refer patients who have health concerns and who have comorbid psychiatric symptoms for psychoeducation, as well as protect patients from uncontrolled anxiety by referring them only to reliable and accurate online sites.
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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.
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This article discusses the growing trend towards ‘lay’ people accessing information about health from the internet. Surveying the major studies of online health consumption, I argue that this phenomenon can be seen as a marker of a broader shift in focus within public health discourse and the popular media on health as an individual ‘lifestyle’ issue. Despite this cultural shift, the medical debate over online health consumption has been largely negative, viewing the internet as an unruly and unregulated space of mis-information and lay web users as potential victims of ‘cyberquackery’. In contrast to this reductive account, I discuss a qualitative study I conducted into young people's use of the internet for health material that showed they are often highly sceptical consumers of online health material. Furthermore, the study found that the kinds of health material young people access is informed by issues of social positionality or ‘health habitus’ complicating individualistic notions of lifestyle ‘choice’.