Background
The availability of health information on the Internet has transformed the landscape of health provision in the United States. Increasingly, people with adverse health symptoms rely on Internet search engines to locate information about their symptoms [
1,
2]. In 2013, 35% of adults in the U.S. indicated using the internet to learn more about medical conditions for themselves or someone else [
1]. Some patients supplement doctor consultations by searching the internet for additional information [
2], while others rely on the internet for self-diagnoses to determine whether they should initiate contact with their doctor [
3]. Despite burgeoning attention to health-information seeking on the Internet, little is known about the downstream consequences of this behavior.
The literature on medical information seeking to-date has focused on two main questions: who engages in medical information seeking and how they go about doing so. Studies found that people with health anxiety [
4], women [
1,
5], young people, and highly educated and wealthy individuals are more likely to seek out health information on the Internet [
1]. Researchers focused both on how people search for health-related information and how they synthesize that information to understand a particular diagnosis. For example, adolescent participants used trial-and-error to construct searches and sift through search results in an unsystematic way [
6]. Others found that lower income individuals tend to search for more specific health-related information compared to those with higher income who conduct more general searches [
7]. They also found that lower-income individuals rely on an intuitive (i.e., fast, unconscious) approach to processing health-related information learned from Internet searches, whereas higher-income individuals rely on a more deliberative (i.e., slow, conscious) approach [
7].
An important area garnering much less attention is an examination of the outcomes associated with health information seeking. Work in this area tends to focus on perceived usefulness of the information patients find, their level of trust in the information sources they consult, and whether they will either initiate a physician visit or consult their physician again after conducting a search [
8]. However, some evidence suggests that health information seeking is associated with lower adherence to medical recommendations [
9,
10] as well as decisions about medical treatments [
11]. In fact, there is a growing concern among providers that the increasing reliance on the Internet for medical information, coupled with what many perceive to be a high probability of encountering misinformation, would lead patients to make the “wrong” decisions about their own treatment and care [
12,
13].
Although cross-sectional studies have examined the relationship between health information seeking and health decisions, none have examined whether the information people are exposed to during a health information search directly impacts decisions they make about treating their own health conditions. When faced with a concern over a standard medication, an internet search for related information can lead to exposure to information that varies in quality or veracity. Ideally, information seekers would find high-quality information based on scientific data from reputable health organizations. Unfortunately, the risk of being exposed to inaccurate and often unverified, or anecdotal information via social media, is nontrivial [
14].
The classic example of misinformation that has gone viral on the internet and has caused undisputable and immeasurable public health harm is the case of vaccination. One unfortunate incident with misinformation linking autism to childhood vaccination [
15] fueled a global social and political movement of “antivaxxers” that various governmental health organizations, such as the Center for Disease Control (CDC) and physician organizations have been fighting for many years now [
16]. However, vaccines are far from being the only medical treatment that has been subject to misinformation, leading many to reject them despite the strong evidence-base supporting them and the recommendations of medical professionals, resulting in detrimental effects to the health of the public. Examples can be found in almost every area, ranging from cancer [
17], to orthopedic [
18,
19] to diabetes [
14]. A better understanding of internet-based health-information seeking and its consequences is required.
In this paper, we chose to study statins because they are a widely prescribed medication, with a strong evidence-base supporting their use to prevent cardiovascular disease [
20], but they are not well adhered to; one estimate indicates that as much as 58% of the U.S. population is non-adherent [
21]. Moreover, there is controversy (and misinformation) about their associated risks and effectiveness. We first developed a tool to assess the quality of statin-related information on the Internet with input from an expert panel of clinicians. Then, we staged an experiment designed to a) track individuals as they searched for statin-related information on the Internet, b) quantify the quality of statin-related information participants saw using the tool we developed and c) determine whether information exposure was associated with a decision to recommend adherence to a statin prescription.
We note that in this experiment we chose to examine adherence to the recommendation of the physician for the initiation of statin treatment, rather than to decisions that patients already taking the medication might be making (i.e., lowering the dose or discontinuing treatment). The latter are often more complex decisions, reached due to side effects or cost considerations, and embody the actual experience of the patient with the medication, which we could not simulate in this study.
We hypothesized that exposure to information about side effects and to negative misinformation during the search would be associated with a lower likelihood of recommending the drug. On the other hand, exposure to benefits of statins and to the management of side effects would be associated with an increased likelihood of recommending the drug. We also used a natural language processing technique to analyze participants’ reasons for their recommendation.
Discussion
Using a mixed-methods approach involving an information quality assessment tool and quantitative and qualitative analyses, we studied how exposure to statin-related information on the Internet is associated with decision-making in a hypothetical context. First, after developing a tool to quantify the quality of statin-related information on the Internet, we found that 22.5% of root websites visited by participants contained misinformation and 50% of sites provided only minimal information about statins, offering less than 19% of the content expected by CLARIFI, and none exceeding 77% of the optimal informational content. Despite the relatively low prevalence of misinformation across websites (22.5%), nearly 60% of participants recommended that their relative ignore their statin prescription.
Overall, our analyses indicated that exposure to information about the clinical benefits of statins and management of potential side effects were significantly associated with a decision to recommend that an older relative initiate a statin treatment. An analysis of the reasons each participant gave for their decision reflected, for the most part, the “weight” of the information they saw online: Recommenders focused on the benefits while non-recommenders focused on the side effects of statins.
These findings suggest that units of information people see on health-related websites are not treated equally by consumers. Generally, the health-related information people are likely to encounter has been found to be of high quality [
28], although more recent evidence suggests otherwise [
12]. However, the factors that lead one person to focus on negative potentials versus clinically supported positive outcomes are not well understood. Some researchers posit that health anxiety may lead people to feel more worried about medical symptoms after an internet search [
29]. Yet, other processes may also be implicated. For example, the search engine and terms people use to begin their search can be markedly different (although 98% of individuals in our sample used Google). This means that as a function of the person conducting the search and terms they input, the trajectory of a search can take myriad tracks that may lead to exposure to more negative information than positive or vice versa. Examining the search process itself deserves more attention and may potentially be a strong mediator of health decision making.
Our findings, taken together with other studies suggesting that patients are influenced by information they read on the Internet and are often influenced by it more than they are by the information provided by the medical providers, indicate that the field has to consider a more expansive notion of the concept of preventive care. No longer is it sufficient for providers to talk to their patients about what they ought to do to prevent disease and maintain health, or to prescribe medications and treatments that enhance health. With the advent and “democratization” of medical-related information, be it correct or incorrect, providers need to identify ways to “immunize” their patients against the influence low quality information on the Internet. Our study does not suggest how this can be accomplished, but it does begin to show that not all areas of information are equally influential.
It is likely that interventions to “immunize” patients against the Internet will take the form of some communication and educational component of the patient/provider encounter, dedicated to a discussion of this issues as it relates to the specific medical condition of the patient at the time of the encounter. However, in the reality of a busy clinical practice these days, and the current reimbursement environment, it is unlikely that the vast majority of providers will be able to allocate the time to such an intervention which is likely to be time intensive. It is, therefore, important to understand what patient types are most likely in need of such interventions and what strategies are most likely to be successful in convincing them to seek credible, evidence-based information.
We note several limitations to our study. First, our results revealed that exposure to misinformation about statins had no bearing on decision making, however, we did not fully capture exposure to other potential sources of misinformation on social media. For example, the CLARIFI tool was not designed to evaluate YouTube videos and message boards (e.g., Reddit) that participants in our sample visited and hence these were excluded from our analysis. Thus, we might have underestimated the negative information our subjects were exposed to.
Second, our study sample (university students) is not reflective of patients typically prescribed statins (i.e., older adults). Individuals in our sample are more likely to be Internet literate than the general population and they are also trained in searching for scientific evidence, with unfettered access to the university’s library database. Although conducting a similar study with a patient population would be more ecologically valid, our approach mitigated certain ethical considerations implicated in studying patients who are prescribed a statin for the first time. The introduction of an Internet search to an actual patient who may not have performed a search otherwise is an intervention which may change that patient’s decision to adhere to their prescriber’s recommendation. Thus, an experiment and intervention such as this may harm patients, and hence is not ethical.
Third, our experiment presented subjects only with the decision to recommend that an older relative start a statin treatment. We did not investigate decisions faced by patients already in treatment who may be considering lowering the recommended dose or stopping treatment all together. It is likely that our findings about the impact of exposure to statin-related information on the Internet will generalize to these other decision points. However, it is possible that information exposure, coupled with personal experiences with statins, may amplify or reduce the weight patients ascribe to different information types (i.e. benefits, side effects, management, misinformation).
An additional limitation is that in our analysis, we treated each information type independently and did not account for the fact that many participants saw most information types on the same webpage. Unfortunately, our sample size did not allow us to examine potential interactions between different information dimensions. Future work, with a larger sample, should examine the interplay between the types of information people are exposed to when conducting a health information search.
We find it surprising that no demographic factors influenced participants’ recommendations. It is possible that undergraduate students from the same university are too homogenous, or perhaps that we did not measure those factors that would have influenced their decisions differentially. Future work should seek an older participant population, while balancing the ethical concerns noted earlier.
This last limitation raises concern about generalizing from this study. Yet, we note that the percent of student participants who chose to recommend use of a statin in our study (41%) is very similar to the national average of patients adhering to their provider’s recommendations to take statins (42% [
21];). This might suggest that, and at least with respect to the impact of information, this study can be viewed to offer initial hypotheses to be tested further in the future.
There is a significant increased risk of dying with lack of statin adherence among patients with atherosclerotic heart disease [
30]. Our findings highlight the potentially lethal perspective over 50% of our subjects come away with after engaging in an Internet search about statins. Moreover, they raise questions about who these 50% are and what about the information on the Internet convinces them to eschew the advice of traditional providers. Are these individuals driven by the true, yet unpleasant, facts about side effects that are not simultaneously accompanied by information about side-effects mitigation? Is it exposure to misinformation, which we surprisingly found to be less prevalent than we expected? Is it a more general mistrust of the medical profession [
31]? Or are the decisions these individuals make driven by the missing information that might have swayed opinions in the direction of a better decision had it been present? More studies like the one we present, addressing some of the limitations our study faced, should pave the way to the design of novel interventions that would assist in answering these important questions and helping providers to lead their patients to medical websites that would enable them to make evidence-based choices.
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