We shall now provide general information about subjects and their medical search behaviors, then focus on how people search for information about undiagnosed medical conditions and the Web’s role in supporting the diagnosis and treatment of known conditions. We further condition findings on gender and on answers to pivotal questions about subjects’ experiences.† To determine the statistical significance of observed differences we use chi-squared tests (χ2) and independent-measures t-tests, and test for significance at p < .05 and p < .01. We denote the mean and standard deviation by M and SD respectively.
Background and Medical Web Search Behavior
Subjects provided demographic information about their gender and age. Of the 515 volunteers, 350 were male and 165 were female. The mean average age was 36 years (median = 35 years, SD = 8 years). Subjects reported that they mainly used Google, Live Search, and Yahoo! to search for medical information online, performed 5–10 medical searches per month, and had novice levels of domain knowledge in the medical areas within which they searched. Approximately 4% of subjects were self-reported hypochondriacs and around 5% had been “called a hypochondriac” by friends, family, or medical professionals. Subjects who self-identified as hypochondriacs performed over five times the average number of health-related searches. Three quarters of subjects reported searching for symptoms and two thirds reported searching for professionally-undiagnosed conditions at least once per month. Subjects generally searched for medical information for themselves (rather than family members, friends, or colleagues), although we observed a significant difference in the percentage of men and women searching on their own behalf (66% vs. 53% respectively; χ2(1)=6.2, p<.01). Further analysis indicates that women search on behalf of relatives more frequently than men.
To establish how subjects searched for undiagnosed conditions, we asked them to estimate the number of health-related searches and the number of searches for undiagnosed conditions they performed per month. Responses to each of these questions are summarized in rows 1–2 of Table 1, along with the question text. Trends suggest that women perform fewer health-related Web searches per month and that Web searches for undiagnosed conditions comprise approximately one quarter of health-related searches.
Responses on undiagnosed conditions. Statistically-significant differences are marked on column boundary between the two samples (^○p < .05, •p < .01). Rows 1–4: independent-measures t-test, Rows 5–8: chi-squared...
In addition to gender division, we conditioned our analysis on answers to pivotal questions, seeking to understand associations among key behaviors and assessments. We conditioned answers on:
RankAsLikelihood: “If your queries contain medical symptoms, how often do you consider the ranking of the Web search results as indicating the likelihood of the illnesses, with more likely diseases appearing higher up on the result page(s)?”
Hypochondriac: “Do you think that you are a hypochondriac?”
OverThreshold: “Do you believe that you have ever been in the situation where Web content “put you over 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?”
We segmented subjects whom responded with Always or Yes to each of these questions and analyzed their responses to other questions relative to those whom responded with Never or No. Findings show that those whom report they “always” interpret result rankings as condition likelihoods (i.e., Always for RankAsLikelihood), those whom self-identify as hypochondriacs (Hypochondriac), and those whom report that the Web has put them over the threshold for consultation with a medical professional (OverThreshold), all perform more medical searches, and search more frequently for undiagnosed medical conditions, than other subjects (all t(127|513)≥2.0, all p≤.02).
We asked subjects to recount the number of times in the past five years that they were concerned about an unknown condition when no condition was ultimately present, to rate their overall anxiety about such conditions on a scale from 1 (“don’t worry about health issues”) to 10 (“severe anxiety”), how frequently they escalate after reviewing Web content (on five-point scale from earlier), and whether this review increases anxiety about a perceived condition. Responses are summarized in rows 3–6 of Table 1. Although not significant, findings suggest that women experience fewer concerns about unknown conditions, including those originating independently of the Web. They also suggest that the Web increased medical anxiety for 40% of subjects. Although the reported medical anxiety levels of men and women were similar, women more frequently experienced escalation and heightened anxiety from exposure to search results and Web sites (both χ2(1) ≥4.8, both p≤.03).
The main factors that contributed to subjects’ anxiety when reviewing Web content were the mention of serious conditions (64% of subjects), the presence of escalatory terminology (e.g., grave, fatal) (41%), and the lack of non-serious conditions (36%). Subjects also commented on the reasons behind their increased anxiety. Responses, coded to identify central themes, targeted worst-case outcomes (e.g., “sometimes I learn of all the terrible things that might be wrong with me based on symptoms searched for”), relevance (e.g., “sometimes the details can be very graphic or more severe than what your doctor would like you to know and may not be specifically relevant to your level of diagnosis”), and unreliability of content (e.g., “too much panicky and uninformed or totally incorrect noise from unreliable sources on the Web”).
When examining the association of the experience of anxiety with Web search and content with other survey responses, we found more anxiety about perceived medical conditions for subjects who responded Always or Yes to RankAsLikelihood, Hypochondriac, or OverThreshold (all χ2(1)≥5.5, all p≤.02).
These subjects’ heightened medical anxiety may affect result interpretation and post-review behavior.
Subjects were asked to estimate how frequently Web search reduced anxiety about a perceived condition. Responses, summarized in row 7 of Table 1, show that around half of subjects were calmed by the Web, with little gender difference. They also show that the Web was less calming for those who responded Always or Yes to RankAsLikelihood, Hypochondriac, or OverThreshold (all χ2(1)≥6.3, all p≤.01).
Subjects reported that their medical concerns were eased by authoritative sources (90% of subjects) or synthesis based on opinions from multiple Websites (48%). Subjects also provided explanations for why the Web reduced anxiety. Responses were on rationalizing concerns (e.g., “sometimes the first thing you read about is a serious illness, but with more searching you find the probability of your symptom resulting in serious illness is small”) and physician interaction (e.g., “information is empowering and it enables you to discuss in more clarity with your doctor”).
We asked subjects about whether their behavior was affected by searching for medical information related to a perceived medical condition. As shown in row 8 of Table 1, approximately 40% of subjects reported that they had experienced this. Of those who reported behavioral changes, 61% said that searches for potentially serious conditions increased, 72% said visits to Web pages describing their perceived condition increased, 62% said engagement with physicians increased, and 59% reported that engagement with medical specialists increased. Results suggest that exposure to Web content can have a significant effect on behavior with respect to undiagnosed conditions.
We also consider searches for known conditions (i.e., conditions diagnosed by a medical professional). Over 80% of subjects reported that they had used the Web to search for a known condition. We asked whether their use of the Web occurred solely after diagnosis and whether the Web helped to reassure them. Subject responses are summarized in rows 1–3 of Table 2. They demonstrate that women are more likely to use the Web as a medical resource and be reassured by encountered content (both χ2(1)≥ 4.6, both p≤.05), and that self-identified hypochondriacs were less likely to be reassured by the Web (χ2(1)=5.4, p=.02). Responses also show that most subjects gathered Web information before diagnosis.
Responses on diagnosed conditions. Significant differences (with chi-squared test) marked (○p < .05, •p < .01).
We asked subjects if the Web helped them understand the terminology the physician used during their appointment or actively participate in the conversation, if they told the physician about their research, and whether they felt uncomfortable bringing it. The responses, summarized in rows 4–7 of Table 2, show that the Web was useful to subjects in understanding their physician’s terminology. Most subjects, especially women, informed their physician that they had searched for information online (χ2(1)=4.8, p=.03). Of those whom shared their own research during the appointment, 37% said that they found the physician was happy to see them informed via the Web, 51% reported that their physicians were neutral, 5% reported that their physician was discontent or irritated, and 7% could not interpret their physician’s feelings.
"We've narrowed down its use to refer to searching for information about health on the internet, which then leads to anxiety. If as a result of searching for health material a person becomes more anxious, which in turn leads to more searching, then that could provisionally be termed cyberchondria."
Dr Starcevic included the diagnostic qualifier because research into the condition is still in its early stages. The term was first coined in 2008, not by a medical doctor, but by Ryen White, a senior information technologist at Microsoft Research.
White and his research partner Eric Horvitz noted that more than one in 20 search engine queries concerned health information. Some users, however, tended to conduct a series of ever-more desperate hunts, leading, they noted, to an "unfounded escalation of concerns about common symptomatology, based on the review of search results and literature on the web."
For psychiatrists such as Dr Starcevic, the challenge is to find the clinical evidence to explain the IT guys' observations. Cyberchondria is similar in many ways to the better understood condition, hypochondria. In a recent article in the journal World Psychiatry, Starcevic termed it one of a "range of psychological functions that have been reconfigured by the digital revolution." Others included cyber-stalking and cyber-bullying.
While many researchers feel cyberchondria is indeed related to hypochondria, he wrote, "conceptual consensus is still lacking."
If consulting Dr Google excessively is just a variety of plain old health anxiety, is it really anything to worry about? If people scare themselves into consulting their GP, then perhaps that's a good thing.
Dr Reeva Lederman, from the Department of Computing and Information Systems at the University of Melbourne's School of Engineering, isn't so sure.
"If you are already hypochondriac then you're going to get more anxious and then eventually go to the doctor. But the big problem is when people go online imagining that they have an illness, decide they do have it, and then buy drugs online to treat that illness," Lederman said.
"People have an expectation that they can live their whole lives online. That's the ultimate problem with cyberchondria."
Lederman researches one of the characteristic expressions of the problem: online support communities. Before the advent of the internet, with only the Illustrated Family Doctor for reference, hypochondriacs tended to be isolated in their concerns. Cyberchondriacs can find many other people who share their anxieties – and their symptoms, real or imagined.
"A lot of my work revolves around the questions of how do you establish trust and credibility online," she said. "You trust your GP because he or she has a degree in medicine, but why do you trust some random person describing his or her symptoms online?"
One way in which trust is built, she said, was through 'group-think'. If enough people in one place profess to believe in something, and profess it often enough, in the collective mind of that group it becomes true, regardless of any evidence to the contrary.
This is well illustrated by the active online support communities for people who believe they have conditions such as Morgellon's disease and 'late stage' Lyme disease. These are illnesses for which there is no clinical evidence at all, despite much research.
"The problem for doctors is that it is harder to convince someone that they don't have something like Morgellons when there is an online community of 15,000 people who all think they do have it," said Lederman.
Indeed, Morgellons – from which Joni Mitchell claims to suffer – provides a classic example of cyberchondriac possibility. Punch it into Google, and the first reference is the usually reliable WebMD.com.
The site's authors hedge their bets. They describe the illness as "controversial" and possibly "a psychosis", but then include a list of possible symptoms so broad they could indicate anything from grass allergy to a mozzie bite. They include "unpleasant skin sensations", "itching" and "skin sores".
Recognising its hefty traffic in health-related queries, in February Google teamed up with the Mayo Clinic in the US to produce search-generated top-of-the-page information cards containing medically verified information for more than 400 medical conditions.
It also tweaked its algorithm to prioritise serious websites such as WebMD over those operated by alternative health practitioners.
The result is an improvement, said Dr Guido Zuccon, a lecturer at the Information Systems School at Queensland University of Technology, but not a solution. Anxiety-inducing medical information often results not from the way Dr Google searches, but from the questions it is asked.
"It's the idea of garbage-in equals garbage-out," said Zuccon. "It's not so much that there is garbage on websites, although there is . . . It's more about how people use the search engine – how they develop strategies for searching for information."
Recent research by Zuccon and colleagues from the CSIRO and the Vienna University of Technology found that on average only three out of the first 10 results on any health-related query were directly relevant. This was particularly the case when people entered symptom descriptions in an attempt to self-diagnose.
"Our analysis reveals that current search engines are not equipped to effectively satisfy such information needs," his team wrote in the book Advances in Information Retrieval. "This can have potential harmful outcomes on people's health."
The research demonstrated wildly different outcomes resulting from different descriptions of the same symptoms.
It's an easily replicated experiment. Entering the technical term 'urticaria', for instance, leads to solid information about hives, as it should. Using the symptom description 'rash all over my body', however, leads to descriptions of, in short order, contact dermatitis, eczema, and meningitis.
"It's OK if you know what you have, but some people are just trying to understand what they have," said Zuccon. "They do not know what they have, so they try to describe what they have. But then the search engine does not know enough to return relevant information.
"Our challenge is to find ways to allow people to be more effective in the way they pose queries. We haven't figured out how to do that yet, but I don't think user education is the most effective way to do it."
Zuccon suspects the solution lies in engineering search engines to behave more like real doctors. "A doctor provides analysis by asking further questions – question by question, ruling out hypotheses," he said. "I wonder if from a search engine perspective we can do the same?"
It's an interesting idea. However, in the age of cyberchondria, it seems that it's not just search engines that need to change their behaviour. According to Reeva Lederman, doctors need to do so, too. Many, she said, feel challenged by patients who have consulted Dr Google before booking an appointment.
"If doctors don't want to cut themselves out, they need to be more receptive to patients coming in and reporting on their web-based research," she said. "They need a new attitude instead of being hostile and feeling threatened by this, which many do. This is the new world. The computer is now part of the process."
But, hang on, what about your back pain? At least, as Guido Zuccon tells the story, based on an actual case, you eventually make an appointment to see your GP, racked with worry about the imminent failure of one or more critical organs, or possibly the tumours that lurk, hidden, within.
You describe your symptoms using exactly the same terms you typed into Google. The doc nods, then asks more questions, then still more. Eventually, possibilities excluded, he advances a diagnosis.
Nothing fatal, he says. Just a muscle spasm. Keep your fluids up. Take a painkiller. Have a nice warm bath.
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