SMsocialnetwork.com www.SMsocialnetwork.com is a Facebook-like social network dedicated to people with MS, created in 2012 by a group of neurologists and psychologists from the 1st Clinic of Neurology of the University of Campania “Luigi Vanvitelli” with vast experience in MS. It is based on Wordpress [32] and BuddyPress [33], two open source platforms for online communities. Several plug-ins are used to enhance and protect the online user experience.

In order to ensure proper use of the social network, we have guaranteed the constant online presence of neurologists amd psychologists from the medical team to oversee and participate on the public wall, intervening promptly in case of posts with false or inappropriate medical information. Neurologists and psychologists are not involved in technical aspects of the social network (graphic design, Web development, hosting services, and chat implementation were managed by the Web designer) but oversee the public activities of the users, post relevant information about MS, protect users from false rumors and fake news, answer questions via private or public message, and preserve users’ right to hope, in total respect of scientific rigor. Their intervention does not include banning users but does include explaining why that specific post is not scientifically correct. The SMsocialnetwork.com plug-ins were chosen in order to protect user privacy; at the subscription step, users had to agree with the privacy policy. Nonregistered users are able to view only the Welcome and About Us pages. Public wall, surveys, chat, and all other sections of the social network are restricted to registered users only.

SMsocialnetwork.com includes the following sections: (1) public wall and public posts, where users may read, write, post, comment, and get in touch with other users, which is continuously monitored by neurologists and psychologists; (2) streaming pages (oral communications at congresses, examples of outpatients visits, etc); (3) groups and forums on specific MS-related areas (pregnancy, pediatric demyelinating diseases, headache, sport, diet, etc); (4) links to scientific news or MS-related events; (5) private one-to-one and multiple chats; and (6) videos on specific topics uploaded by physicians on the SMsocialnetwork.com staff or external consultants with specific competence in MS. At the time of the investigation, SMsocialnetwork.com included 1020 active users (users who visited SMsocialnetwork.com and logged in over the 2 months prior to the study). The total number of pages viewed was 187,073, the average number of pages viewed per visit was 5, and the average duration of a session was 7 minutes 28 seconds.

The study was performed in accordance with good clinical practice and the Declaration of Helsinki. All participants consented to the use of recorded surveys for scientific purposes on aggregate level. To protect the anonymity of the participants, the Internet protocol codes of the computers were not registered and no electronic cookies were embedded.

We conducted a Web-based survey availing ourselves of a marketing approach generally used to learn how the system design and the social aspects of Web communities jointly influence members’ behavior and participation [24,25,34-36]. We used a 39-item survey posted from April to June 2015 on the SMsocialnetwork.com public wall (displayed in a pop-up window when visitors accessed the website).

The survey was created with the collaboration of the Department of Business and Management of the Free International University for Social Studies “Guido Carli” (LUISS) in Rome and has been hosted on its server. SMsocialnetwork.com and all its data were hosted on an Italian server and MySQL database managed by Aruba Group. The full Italian version of the survey is available in Multimedia Appendix 1.

The 7 main areas of interest on the survey were as follows:

Descriptive statistics are presented as relative frequencies, medians or means, and standard deviations, where applicable. Factorial analysis was performed to confirm the hypothesized domain structure and was implemented for each area of interest, considering only the first factor. Cronbach alpha was used to evaluate internal consistency reliability of each factor. Values above 0.70 for Cronbach alpha and above 0.8 for variance were considered acceptable. Items were excluded if they exhibited a low correlation with the construct, having a communality or item-rest correlation lower than 0.2. To evaluate consistency of items separately in each area of interest, we used factorial analysis to confirm that these items represent the same construct. Stata 13.0 (StataCorp LLC) was used for all analyses.

In our analysis, the median scores of the areas of interest were above (utility, proximity, sharing, interaction, and exploration) or equal (solving uncertainty and suggestion attitude) to the intermediate value of the Likert scale. These data indicated, in line with the previous work of Oxman and Guyatt [37], a satisfaction with SMsocialnetwork.com (see Figure 1). Indeed, users positively evaluated SMsocialnetwork.com in the following areas:

Furthermore, SMsocialnetwork.com users showed a tendency to explore other Web pages related to MS (eg, Web communities, thematic pages on general social networks, blogs, forum, chats) and exhibited both a high degree of satisfaction and a low degree of problematic experiences in the SMsocialnetwork.com community.

Social networking is one of the major players in the current era of transformational changes in how information is accessed and shared [38]. It is known that social networks transmit media such as video, blogs, ratings and reviews, podcasts, and audio among a group of people who are linked by a common characteristic, such as likes and dislikes [39]. Although social networks are considered primarily a recreational tool, they are becoming increasingly important to businesses and organizations [40]. Specifically, social networks hold considerable potential value for health care organizations because they can be used to reach stakeholders, aggregate information, and leverage collaboration [28,41]. In health-related areas, social networks users may find a way to track progress about the disease and access disease information, learn from real-world experiences of other people with the same medical condition, share their findings with other patients and with health care professional organizations, and create a virtual space where patients and caregivers give and receive support [42-45]. The high number of disease-related Internet pages is likely due to the ease of taking advantage of the Web’s opportunities through the virtual environment. Recent research showed that a high number of Americans get information about therapies or diseases online [5] and a very high number of physicians and nurses are interested in using social networks for professional purposes. Because both patients and clinicians are using social networks, health care organizations have an opportunity to leverage multiple audiences. Recently, it has been recorded that more than 700 of the 5000 US hospitals count on social media and social networking to enhance their ability to communicate to stakeholders. Despite a high number of Web pages dedicated to MS, to the best of our knowledge, there are no social networks specifically dedicated to MS, and SMsocialnetwork.com is the first social network to share evidence-based information with the added value of the constant online presence of the medical experts. Using a Web-based survey, we investigated SMsocialnetwork.com as a shoppable condition [12,13,20] in which users may acquire information to support health-related coping and their social interaction.

We observed that MS patients interact on the Internet not only about MS-related issues but also on general personal opinions and private life information (sharing). Moreover, users showed a tendency to play an active role online by dynamic chatting and private messaging as well as posting interesting, supportive, or sympathetic comments (proximity). We observed a low user tendency to get in touch with other users in real life (interaction). While SMsocialnetwork.com users appreciate an intimate, close, and empathic community, they prefer an online relationship than face-to-face interaction compared to people in nonthematic Web communities. Indeed, the users of generalist social networks (eg, Facebook) seem to have close relationships in real life, and only a small percentage of social network users have never met or only met their Internet-based friends once [46], supporting that online social media are not a substitute for real-life interpersonal exchanges but offer a different experience that brings people together. We cannot exclude the role of MS disability on the reduced user real-life interpersonal relationships, as previously found in other chronic diseases [47-50].

In this study, we collected 130 questionnaires, which may be considered a small number for a factorial analysis. However, we used the factorial analysis only to confirm the construct identified by items; on these premises our results should not have been affected by a larger sample size. Moreover, our response rate is in accordance with the mean response rate of social network–based studies, ranging from 2% to 27% with an average of 12%, generally considered as an indicator of reliable data quality for social network–based studies [51,52].

We excluded 35.6% of the surveys from the final analysis, which had more than 20% of the missing data. This is in line with the very high percentage of missing data generally observed in online surveys, where the anonymity allows inaccurate answers or early interruption of the questionnaire (missing data range from 15% to 20% in quantitative research) [53].

We cannot compare our data with those from other MS social networks without constant online presence of the medical team. Indeed, to the best of our knowledge, there are no social networks specifically dedicated to MS.

In our survey there were no items directly investigating the appreciation of MS experts’ contribution in SMsocialnetwork.com. However, in our factorial analysis, median scores of the areas of interest indicated, in any case, a general satisfaction [37] with the Web platform (see Figure 1). Obviously, we can only speculate about the advantage brought by the constant online presence of the SMsocialnetwork.com medical team. Finally, SMsocialnetwork.com did not provide an explanatory tutorial that would have been useful to facilitate users completing the survey [52].

In this study, we observed that an MS-dedicated social network (SMsocialnetwork.com) is perceived by users as a useful tool to receive information and solve problems in daily life, providing innovative and effective insights about MS health care. Moreover, users were prone not only to give information but also to hear and listen to others, and they did not try to convince and impose their opinions; they appeared to like discussing personal problems at the same level with others. We speculate that users were reassured by SMsocialnetwork.com experts’ constant online presence and competence. We also believe that an MS-dedicated social network may allow MS experts to reach a deeper comprehension of the needs of people with MS and may suggest how to improve both medical communications and clinical empathy, likely configuring a new kind of therapeutic alliance between physicians and patients.