Usage and benefit of the Internet as a source of information on disease and therapy in dermatology

Dear Editors, The presence and 24-hour availability of digital data on the internet have led to the fact that more and more people – including patients – obtain most of their medical and health information from the internet.1 However, it is largely unknown how patients inform themselves about their disease. The goal of this study was to assess participants’ information sources and how this information is used in clinical practice. We used a questionnaire of 22 questions, distributed to outpatients from 01.09.2019 to 01.04.2020 in six university hospitals in Austria and Germany (detailed methods can be found in the online supplementary data S1 and S2). This questionnaire was answered by 2,228 participants (1,274 female [57.2%] and 928 male [41.7%]), mean age 45.5 years (standard deviation [SD] ± 18.4); female: 44.4 (± 17.8), male: 47.4 [± 18.9]) (detailed in online supplementary Table S1). Most of the participants (n = 1,488, 66.8%) collected information from various sources about their disease, confronted their doctors with their findings (n = 1,052, 47.2%), stated that the acquired information influenced their therapy decision (n = 1,017, 45.6%), but did not change therapy decision (n = 1,034, 46.4%). Statistically significant correlation with gender was found with the number of visits per patient to the hospital (p = 0.001), use of social media platforms (p < 0.001), amount of time spent on the internet for work (p < 0.001) or during free time (p = 0.005) (detailed in online supplementary Table S2). Chronic status of the skin disease showed statistically significant associations with the number of visits to the hospital (p < 0.001) and if someone reads scientific literature (p = 0.002). Patients with higher educational level (p = 0.003), employed patients (p = 0.001), patients requiring frequent hospital visits (p = 0.041), patients who spend more time on the internet for work purposes (p < 0.001), gathered information about their illness (p < 0.001), confronted their doctors with their findings (p < 0.001) and read scientific literature (p < 0.001). These patients stated more frequently that collected information influenced their therapy decision. Therapeutic decisions were more likely to be changed by patients who were employed (p < 0.001), if they gathered information about their illness (p = 0.001), confronted their doctors with their findings (p < 0.001) or by patients reading scientific literature (p = 0.005). Different social media use was analyzed regarding gender (Online Supplementary Figure S1a), if participants tend to confront their doctors with their finding(s) (Online Supplementary Figure S1b), if participants were seeking information on the internet (Online Supplementary Figure S1c), participants influenced by information obtained from the internet (Online Supplementary Figure S1d) and participants who tend to change their therapeutic regime themselves due to information obtained from the internet (Online Supplementary Figure S1e). Google was always the first choice followed by Facebook and Instagram. When patients were asked where they obtained their information about their skin disease, male patients preferred Google (43%) in a similar proportion as women (55%) followed by friends (35% vs. 33%) (Figure 1a). Google was also the preferred choice (52%) in acute and chronic diseases (Figure 1b). Patients who changed their therapy themselves used in similar proportions Google (Yes [52%] vs. No [53%]), but consulted more often friends (44% vs. 31%) or Wikipedia (34% vs. 31%) (Figure 1c) than patients who did not. Patients who confronted their doctors with their obtained information from the internet used Google (50%) and friends (35%) (Figure 1d). We applied multivariable analysis and found that participants were more likely to inform themselves about their illness when trying to influence their therapy decision (Odds Ratio [OR] 6.4), confronting their doctors with their findings (OR 4.3) or reading medical literature (OR 3.6) (Figure 2a). Participants were more likely to confront their doctors with their findings when wanting their therapy changed (OR 3.0) or when at least trying to influence their therapy (OR 4.2) (Figure 2b). The choice not to confront doctors with their findings led to higher likelihood of changing the therapeutic regimen (OR 0.3), (Figure 2c). Information on diseases and treatment options are now available from many different sources on the internet, with all its possibilities.2 This can be problematic since patients are highly motivated to get information of their disease, as they want to understand and influence the course of their skin disease.3 Interestingly, our study reveals a tendency of patients to obtain information from health care professionals and more professional internet sources when the disease is chronic, switching from friends/family to Wikipedia and pharmacists. Apart from consulting the internet, patients tend to ask persons within their closer environment including friends and family, as shown previously and supported by our data.4 Therefore, the findings of this study provide further insights into how and to what extent patients gather and obtain information about their dermatological diseases and add details to current knowledge from previous studies.5 Reviewed and approved by the IRB of the Medical University of Graz; approval 30–418 ex 17/18, the IRB of Charité – Universitätsmedizin Berlin; approval EA2/077/19 and the IRB of the Medical Faculty of the University of Bonn; approval 350/19. None.