Three reasons for online information seeking

There were three primary reasons why patients looked online for information about bipolar disorder: prescription drugs, perceived anonymity, and help coping. About half the patients looked online because of side effects from prescription drugs, in agreement with prior reports that patients with bipolar disorder want to know more about their drugs and especially side effects (Hallett et al. 2013; Bowskill et al. 2007). Many patients looked online to learn about bipolar disorder without revealing their identity. Although incorrect, the belief that one is anonymous online is a commonly perceived benefit of the Internet by those with a stigmatized illness (Berger et al. 2005; Pohjanoksa-Mäntylä et al. 2009; Chan et al. 2016). Patients also sought information online because they were having difficulty coping with the illness, confirming the need for online sources to help deal with the consequences of bipolar disorder.

Using a general search engine on a computer

The vast majority of patients started looking for information on bipolar disorder from a general search engine (79 %) on a laptop/desktop computer (89 %). This is consistent with prior findings that 80 % of the general public started looking for health information with a general search engine (Fox and Duggan 2013), and that general search engines are used much less frequently from a smartphone than from a computer (Arthur 2015; MacMillan 2015; Friedman 2015). Providers involved in developing online projects for bipolar disorder should consider how the targeted consumer device may impact use. About 43 % of total handsets in the world were smartphones in 2015, with an expected increase to 50 % by 2020 (Cisco 2016). In some countries such as the US, those with mental illness may have a much lower smartphone ownership than the general public (Klee et al. 2016; Miller et al. 2016).

General search engine background

Most patients start looking for information from a general search engine. Google dominates with a market share of ≥90 % in all but 3 of the 17 countries in this study, the exceptions being 87 % in Canada, 73 % in Hong Kong and 73 % in the US (Return on Now 2016). Search terms entered are brief and guided by auto-completion suggestions, with 57 % in Google US being 1–2 words, and 88 % being 4 words or less (Statistica 2016). Over 90 % of people select a website from the first page of search engine results, with 61 % of people selecting a web site from the top 3 results (Sharp 2014).

1/3 rated search skills as expert

In this study, about 2/3 of the patients rated their search skills as basic or intermediate, and 1/3 as expert. There was no association between education and self-rating as an expert. The factors that increased the odds of self-rating as an expert included being male, having confidence when to see the doctor about bipolar disorder, having Wikipedia as a favorite source, and attempting to verify the information. In prior research, self-reported computer skill ratings were found to be unreliable (Merritt et al. 2005), with university students tending to overestimate their abilities (Ivanitskaya et al. 2006), and females perceiving lower abilities than males at the same skill level (Bunz et al. 2007). There are several concerns about the accuracy of the self-rating of search expertise in this study.

A minority of patients (16 %) always found what they were looking for, but this was not associated with expertise, education or attempting to verify the information. However, always finding the answer was associated with not consulting more than one medical professional. There is concern that some patients may be satisfied with any answer, or use the Internet as a second opinion.

Although 1/3 of the patients rated their search skills as expert, it is quite difficult to search for medical information. In a recent study, no answer was found in the top three search results returned for 32 of 54 simple consumer mental health questions using the National Institute of Mental Health (NIMH) website (Crangle and Kart 2015). Patient questions are not answered due to a high degree of specificity, false presuppositions, and layman use of medical terminology (Crangle and Kart 2015; MacCray et al. 1999). In an analysis of consumer messages to MedlinePlus, the majority concerned specific medical questions rather than general information (Miller 2007). For perspective, physicians also report barriers to successful online searching including the need for specific information, too much information, selecting reliable sources, and time requirements (Clarke et al. 2013; Bennett et al. 2004; McKibbon and Fridsma 2006).

There was no association between concern about privacy and expertise. In this study, 43 % of patients believed they are anonymous online, a result similar to the 37 % found in a survey of the US general public (Rainie et al. 2013). Although the legal framework for online privacy varies internationally (Bowman 2016), this finding emphasizes an important need to educate patients at all levels of expertise about privacy on the Internet. Commercial firms that provide services at no charge, including search engines, social media, and many medical sites, generally make money by tracking all activities to sell targeted behavioral advertising, or by selling the tracked activities to third parties (Greengard 2012; Stark and Fins 2013; Glenn and Monteith 2014; FTC 2014; Eavis 2016; Rosenberg 2015). The data collected includes details about all Internet and smartphone activities including search terms, websites visited, email and social media content and metadata (data about data that provides context) (Libert 2015; NISO 2004). In a recent study of over 80,000 health-related websites in the US, over 90 % sent data to third parties, with 70 % including specific symptoms, treatments and diseases (Libert 2015). Those who use social media and online support groups owned by commercial organizations may not realize that privacy policies often give consent to the sale of patient created data (Li 2013; Lupton 2014; Glenn and Monteith 2014). Online medical data may be combined with other data for health risk predictions (Dixon and Gellman 2014), combined with genetic data for commercial research (Seife 2013), and de-identified data may be re-identified using very large, high-dimensional databases (Narayanan et al. 2016). Even though the legal framework is changing, such as with the general data protection regulation (GDPR) to be implemented by 2018 for the EU (European Parliament News 2016), patients of all search skill levels need to understand the data policies of websites they visit regularly for information on mental health.

Favorite sources are mental health sites and Wikipedia

For 59 % of the patients in this study, a mental health site was a favorite information source on bipolar disorder, while Wikipedia was a favorite source for 33 %. The factors that increased the odds for a mental health site included being female, needing help coping, consulting more than one medical professional, and attempting to verify the information. Being male or having expert search skills increased the odds that Wikipedia was a favorite source.

Types of mental health sites

Websites on mental health are owned by a variety of entities, including governments, professional organizations, and commercial businesses. The overall content of most Internet information related to affective disorders is generally rated as good (Grohol et al. 2014; Morel et al. 2008) although the quality may vary considerably (Reavley and Jorm 2011; Hasty et al. 2014; Barnes et al. 2009; Monteith et al. 2013). The content of government websites, such as from the US MedlinePlus and UK NHS are evaluated for accuracy and currency (MedlinePlus 2016; NHS 2016). Hospitals and health systems own many websites and understand the importance of accuracy, but also view these websites as marketing opportunities (Ford and Walls 2012). Website content from providers that offer specific treatments, such as substance abuse treatment centers, may be incomplete or imbalanced (Schenker and London 2015; Link et al. 2016).

Articles from Wikipedia, the open encyclopedia that invites user contributions, frequently appear in first page of results for medical searches (Laurent and Vickers 2009). The Wikipedia entry for bipolar disorder was viewed over 13 million times in 55 languages in 2013 (Heilman and West 2015). In 2013, there were less than 300 editors for the medical articles on Wikipedia, of which 82 % were male and 50 % were healthcare providers (Heilman and West 2015). About 85 % of the medical editors had a college degree, with editors of the non-English versions having a similar education level. As in this study, more males (56 %) than females (44 %) are readers of Wikipedia about all topics (Pande 2011).

As of 2015, the Google search engine returns pre-vetted facts at the top of the first page for many medical searches (Google 2015). Beyond this, results may be tailored to the user based on behavioral advertising algorithms (Monteith et al. 2013; Vaidhyanathan 2012). The results of medical searches from all major search engines overlap considerably (Wang et al. 2012).

Website language

There was no association between a native language other than English and the favorite information source in this study. Based on the top 10 million websites on the Internet, 53.6 % of all content is in English (W3 Techs 2016). The percent of content in German, Japanese, Spanish and French ranged between 4 and 6 % each, with a smaller percent in the other languages in this study. One consequence of the Internet is a global increase in teaching English as a second language. In 2014, 77 % of primary school students in the EU learned English as a foreign language, up from 35 % in 2000 (Eurostat 2016; Parker 2015).

Searching a couple times a year

Most of the patients in this study (62 %) looked online for information a couple of times a year, while 38 % looked monthly or more often. The odds of looking online more frequently were increased if bipolar disorder interfered with life, the patient was looking for drug side effects, felt the internet helps to cope, read or contributed to an online support group, or if male. The odds of looking online more frequently were decreased if patients were mostly euthymic, or if they were very educated. Both experiencing symptoms and participation in online support groups were previously noted to increase the frequency of information seeking (Rice 2006; Weaver et al. 2010). The very educated may prefer to consult with their doctor for individualized treatment (Bauer et al. 2016).

Seeking information on medical topics

The patients in this study most often sought information about medical topics, including symptoms (83 %), prescription drug information (73 %), general course of illness (58 %), coping strategies (52 %), and less frequently about nonmedical topics including clinic location, hours and directions (52 %), and physician credentials (31 %).

The strong patient interest in prescription drug information is important since both physical and mental side effects are associated with nonadherence (Bates et al. 2010; Johnson et al. 2007; Baldessarini et al. 2008; Szmulewicz et al. 2016). The accuracy of drug information on websites for consumers is of concern. Research has focused on Wikipedia, and compared the content for a variety of drugs to official product labels or professionally edited compendia. The drug information content on Wikipedia was mostly accurate but lacked details, was often incomplete (Kupferberg and Protus 2011; Clauson et al. 2008; Lavsa et al. 2011), and drug safety information may not be current (Koppen et al. 2015; Hwang et al. 2014). Some drug articles on Wikipedia were missing references (Lavsa et al. 2011) and unlike professional compendia, cited news stories as references (Koppen et al. 2015). Similarly, studies of accuracy of drug information on other consumer websites found generally good content quality but incomplete topic coverage (Sidhu et al. 2006; Ghoshal and Walji 2006).

Drug review websites based on patient ratings of drugs are also available online. Unlike standard compendia, patient review sites emphasize side effects and personal ratings of efficacy. These sites may over-represent the experiences of patients with acute exacerbations of illness, severe side effects or dissatisfaction with results (Chew and Khoo 2016; Hughes and Cohen 2011). Comparisons of drug efficacy ratings found that results varied among the patient review sites (Gidwani and Zulman 2015; Chew and Khoo 2016).

Patient education should emphasize that online drug information may be inaccurate or incomplete, even in compendia (Randhawa et al. 2016), and that patients should seek multiple sources. The emphasis on personal experience in drug review sites may be useful to some patients (Hughes and Cohen 2011; Chew and Khoo 2016), but patient education should also explain that these sites are not authoritative. Some patients may not realize that high quality drug information is available for free from government sources such as the US National Library of Medicine Drug Information Portal (NLM 2016).

Information seeking helps with coping

Online information seeking sometimes or frequently helped 67 % of the patients in this study to cope. In this study, the factors that increased the odds that information seeking helped to cope included being mostly euthymic, always finding what looking for, searching monthly or more frequently, needing help coping, and discussing findings with the doctor. In a prior study of high functioning patients with bipolar disorder, education about the disease was a key strategy for staying well (Murray et al. 2011).

Only 20 % of the patients read or participated in online support groups or forums, a rate similar to that for the general public (Fox 2011). In this study, participation in online support groups was not associated with information seeking helping patients to cope. This finding suggests that the information learned online is what helps most patients to cope, rather than emotional support or coping skills learned in online support groups. Prior research on online communities reported that information seeking was the most important activity, (Nambisan 2011; Meier et al. 2007; van Uden-Kraan 2009), although emotional support was also important in bipolar disorder (Bauer et al. 2013). The time length of most online psychological interventions is considerably shorter than for face-to-face programs and may not offer sufficient professional access for patients to learn coping skills (Hidalgo-Mazzei et al. 2015).

In this study, 67 % of the patients rarely or never discussed what they learned online with their doctor. About 60–80 % of general medical patients also do not discuss Internet health information with their doctor for reasons including time constraints, fear of insulting the doctor or being dismissed, information was self-explanatory, and a desire for self-management (Chung 2013; Russ et al. 2011; Hay et al. 2008; Kim and Kim 2009; Diaz et al. 2002; Imes et al. 2008). In this study, the factors that increased the odds of patients discussing online information with their doctor include feeling very confident about when to see the doctor, feeling the Internet helped to cope, and attempting to verify the information. Similarly, in prior research, patients who talked with their doctors felt the information from the Internet was of high quality (Diaz et al. 2002; Chung 2013).

The patients in this study had a mean of 17 years of illness, so it is likely that many searches were for specific questions rather than general information about bipolar disorder. Since most patients do not discuss the information learned online with their doctor, patient education about online health information seeking is important, and should be integrated into psychoeducation programs. There is a need to help patients to access high quality information, such as by providing a short list of recommended websites (Monteith et al. 2013). Website recommendations from physicians are favorably received by general medicine patients, and may increase communication about online information seeking (Coberly et al. 2010; Siegel et al. 2006). Patients should also understand that even a clear and accurate website will probably not provide answers to specific questions about their personal situation (Miller 2007).