Demographics
Of the 398 patients who fulfilled the inclusion criteria, 312 agreed to participate, yielding a response rate of 78.4%. Patient demographics are displayed in Table 1. Patients were also asked to rate how satisfied they were with the information they received as part of their consultation with their doctor, with 181 (58%), 107 (34.3%), 11 (3.5%), 2 (0.6%), and 7 (2.2%) patients reporting that they were very satisfied, satisfied, neither satisfied nor unsatisfied, unsatisfied, or very unsatisfied, respectively.
Table 1 Patient demographics Uptake and extent of online health information-seeking
Among the whole study population, 224 (71.8%) patients reported health information–seeking behavior prior to their appointment. The Internet was by far the commonest source of information (175, 56.1% of the whole population and 78.1% of health information-seeker subgroup, respectively). Indeed, the frequency of Internet use for health information purposes matched that of all other (traditional) sources of information combined (178, 57% of the whole study population) (Table 1).
On interrogating demographics, only younger patients and the more educated were significantly more likely to exhibit OHI-seeking (Table 2).
Table 2 Relationship of demographic parameters with online health information (OHI)–seeking status OHI-seekers reported spending a mean of 85.4 min (SD 170.6 min) in the preceding month searching the Internet specifically for HRI for the health concern(s) that brought them to see the doctor. When asked how frequently they had gone online in the past month for HRI-seeking about their health concern(s), on average, they surfed the web 4.6 (6.8) times, thereby spending, on average, 18.6 min per OHI session. The number of times they logged in online was strongly correlated with time spent seeking OHI (r = 0.566, p < 0.001, Pr).
How the Internet is utilized for health information and perceived reliability
The majority of OHI-seekers (134, 76.6%) collected their web-based information in preparation for the consultation via search engines (e.g., Google, Yahoo, and Yandex). Other ways of conducting their online search were “directly looked at specific websites” (21, 12%), “patient forums” (2, 1.1%), “Facebook” (2, 1.1%), and “others” (3, 1.7%) (missing values 13). Patients reported that the main criterion for choosing a specific website was whether it appeared first in their search engine results (71, 40.6%). Alternatively, they chose websites because they belonged to health institutions or services (38, 21.7%), academic institutions (24, 13.7%), societies for a specific illness (e.g., Diabetes UK) (17, 9.7%), Wikipedia (6, 3.4%), or “other” criteria (6, 3.4%) (missing 13).
Further probing into patients’ perceptions of trustworthiness was via the question: “How do you determine whether a website has trustworthy information or not?” Subsequent thematic analysis revealed that the three most frequent explanations offered by patients were (in decreasing frequency) belongs to an academic institution, belongs to a health/medical institution or authority, and if the website has been certified by their physician (Fig. 1).
When asked to rate the quality of OHI, roughly three quarters of patients reported it was either “good” or “very good,” while about half thought of OHI as “reliable” or “very reliable” (Table 4). The reporting of good or very good quality increased as education level increased (31, 73.8% vs. 60, 76% vs. 42, 85.7% for high school, university, and postgraduate education, respectively, p = 0.047, χ2, missing 5), and the same was true for perceived reliability of OHI (18, 45% vs. 33, 42.3% vs. 33, 70.8% for high school, university, and postgraduate education, respectively, p = 0.054, χ2, missing 9). Forty patients (22.9%) perceived that the quality of the information they received from their doctor was better or much better than that received from OHI, 30 (17.1%) felt it was worse or much worse than OHI, but most reported no preference (99, 56.6%; missing 6). Finally, when asked whether they are aware of how to identify websites whose HRI has been certified in terms of its reliability (e.g., by the Health On the Net (HON) Foundation), most participants reported a lack of awareness (104, 59.4%).
Why patients go online for health information prior to their endocrine outpatient’s review: why not?
The commonest reason for seeking OHI in relation to their health concern prior to their appointment was “to gather general information” (Table 3).
Table 3 Reasons for using and not using the Internet for health-information gathering Further probing asked: “If you made use of the Internet for information gathering prior to your consultation today, why did you use this medium?” Thematic analysis revealed that the three most frequent explanations offered by patients were (in decreasing frequency): information gathering, ease of access, and because the Internet offers plenty of information (Fig. 2).
On the other hand, the commonest reason cited by non-OHI-seekers for not checking OHI was that they felt it was pointless before seeing the doctor (Table 3).
Impact of online health information
Emotional and behavioral impact
Overall, more OHI-seekers reported feeling better or much better (53, 30.3%) rather than worse or much worse (14, 8%), albeit most patients reported feeling “neither better nor worse” after “seeking and finding” OHI (106, 60.6%; missing 2). Conversely, slightly more patients reported that their anxiety levels increased or markedly increased (44, 25.1%) following their online search for health information, but again, most participants remained neutral (92, 52.6%; missing 4). Over one third (63, 36.6%) of participants reported that their behavior changed after seeking OHI (e.g., by taking better care of themselves or being more compliant with taking medication), while 93 (53.1%) answered negatively; missing 18.
Further probing regarding the influence of OHI on their management asked: “Has the information you obtained from the Internet influenced your decisions concerning your management plan in any way (for example, what investigations and/or therapies you are going to have)?” The 27 patients who answered this question positively (15.4% of OHI-seekers) were then asked to explain how it affected their management. The three most frequent explanations offered by patients were (in decreasing frequency) “better treatment choices”, reinforcement of doctor’s information, and that the information gathered prompted their visit to the doctor (Fig. 3).
Impact on doctor-patient relationships and satisfaction with the consultation
Only 45 (25.7%) OHI-seekers mentioned the online information during their consultation with the doctor and 117 (66.9%) did not (missing 13). The reasons why OHI was not mentioned were that the “doctor was thorough” (78, 66.7%), that they “forgot to mention it” (9, 7.7%), that “information on the Internet was not trustworthy” (6, 5.1%), or that they “did not want to appear to challenge the doctor” (4, 3.4%). Only two patients cited lack of time and one patient reported being ashamed to mention it (“other” option chosen by 9 (7.7%); missing values 8).
Assessment of the degree of fulfillment of information needs by the Internet
Firstly, OHI-seekers were asked how well existing Internet information meets their health information needs; 80 (45.7%) answered “neither well nor poorly,” 55 (31.4%) and 2 (1.1%) answered “poorly” or “very poorly,” respectively; only 28 (16%) and 4 (2.3%) answered that their needs were “well” or “very well” met, respectively (missing 6). Education level did not influence how well OHI met patients’ health information needs (p = 0.338, χ2). Secondly, patients from the whole study population were asked whether they needed extra information in relation to the health concern that brought them to see the doctor, with about one third answering positively (109, 34.9%) (missing 3). Among these 109 patients, the preferred format for the additional information was face-to-face meetings with the doctor (82, 75.2%), followed by electronic (14, 12.8%), leaflets (4, 3.7%), or “other” (6, 5.5%) (missing 3). Thirdly, patients from the whole study population were asked whether they would be interested in an interactive e-learning module (software using text, pictures, videos, and presentations, and the ability to interact with the information), if it existed, for their endocrine condition, with the majority (194, 62.2%) reporting an intention or willingness to use such an e-learning module (missing 8). Existing OHI-seekers were significantly more likely to want to utilize a potential interactive e-learning module (130 (74.3%) among OHI-seekers vs. 64 (46.7%) among non-OHI-seekers, p < 0.001, χ2). Similarly, those who expressed a wish for more information regarding their health concern were significantly more likely to be interested in an e-learning module, 76 (69.7%) of seekers of extra information vs. 118 (59%) of non-seekers (p = 0.024, χ2).
Language skills and OHI-seeking behavior
Most patients (256, 82.1%) completed the questionnaire in Greek (“GR-fillers”) and the rest in English (“EN-fillers”), with the latter subgroup being significantly more likely to report that their information needs were well met by the Internet (Table 4). However, only about a quarter of patients performed their online search solely in Greek, with a third searching in both Greek and English or English alone. The language used to complete the questionnaires did relate to the language in which the Internet search was performed (p < 0.001, χ2). Patients who performed their online search in English were significantly more likely to report that OHI met their health information needs well or very well (15 (26.8%) for English, vs. 9 (14.8%) for both English and Greek, vs. 1 (2.3%) for Greek language alone, p < 0.001, χ2); the result remained significant when adjusted for age and education level by ordinal regression analysis (p = 0.033, Nigelkerke R2 = 7.8%). The preferred language for any additional information was Greek (63, 57.8%), followed by English (23, 21.1%) and dual Greek/English (22, 20.2%).
Table 4 Preferred language for questionnaire completion and online health information-seeking behavior