Impact of Social Processes in Online Health Communities on Patient Empowerment in Relationship With the Physician: Emergence of Functional and Dysfunctional Empowerment

Background: Substantial research demonstrates the importance of online health communities (OHCs) for patient empowerment, although the impact on the patient-physician relationship is understudied. Patient empowerment also occurs in relationship with the physician, but studies of OHCs mostly disregard this. The question also remains about the nature and consequences of this empowerment, as it might be based on the limited validity of some information in OHCs. Objective: The main purpose of this study was to examine the impact of social processes in OHCs (information exchange with users and health professional moderators, social support, finding meaning, and self-expressing) on functional and dysfunctional patient empowerment in relationship with the physician (PERP). This impact was investigated by taking into account moderating role of eHealth literacy and physician’s paternalism. Method: An email list–based Web survey on a simple random sample of 25,000 registered users of the most popular general OHC in Slovenia was conducted. A total of 1572 respondents completed the survey. The analyses were conducted on a subsample of 591 regular users, who had visited a physician at least once in the past 2 years. To estimate the impact of social processes in OHC on functional and dysfunctional PERP, we performed a series of hierarchical regression analyses. To determine the moderating role of eHealth literacy and the perceived physician characteristics, interactions were included in the regression analyses. Results: The mean age of the respondents in the sample was 37.6 years (SD 10.3) and 83.3% were females. Factor analyses of the PERP revealed a five-factor structure with acceptable fit (root-mean-square error of approximation =.06). Most important results are that functional self-efficacy is positively predicted by information exchange with health professional moderators (beta=.12, P=.02), information exchange with users (beta=.12, P=.05), and giving social support (beta=.13, P=.02), but negatively predicted with receiving social support (beta=−.21, P<.001). Functional control is also predicted by information exchange with health professional moderators (beta=.16, P=.005). Dysfunctional control and competence are inhibited by information exchanges with health professionals (beta=−.12, P=.03), whereas dysfunctional self-efficacy is inhibited by self-expressing (beta=−.12, P=.05). The process of finding meaning likely leads to the development of dysfunctional competences and control if the physician is perceived to be paternalistic (beta=.14, P=.03). Under the condition of high eHealth literacy, the process of finding meaning will inhibit the development of dysfunctional competences and control (beta=−.17, P=.01). Conclusions: Social processes in OHCs do not have a uniform impact on PERP. This impact is moderated by eHealth literacy and physician paternalism. Exchanging information with health professional moderators in OHCs is the most important factor for stimulating functional PERP as well as diminishing dysfunctional PERP. Social support in OHCs plays an ambiguous role, often making patients behave in a strategic, uncooperative way toward physicians. Journal of Medical Internet Research

Comparison of Different Recruitment Methods for Sexual and Reproductive Health Research: Social Media–Based Versus Conventional Methods

Background: Prior research about the sexual and reproductive health of young women has relied mostly on self-reported survey studies. Thus, participant recruitment using Web-based methods can improve sexual and reproductive health research about cervical cancer prevention. In our prior study, we reported that Facebook is a promising way to reach young women for sexual and reproductive health research. However, it remains unknown whether Web-based or other conventional recruitment methods (ie, face-to-face or flyer distribution) yield comparable survey responses from similar participants. Objective: We conducted a survey to determine whether there was a difference in the sexual and reproductive health survey responses of young Japanese women based on recruitment methods: social media–based and conventional methods. Methods: From July 2012 to March 2013 (9 months), we invited women of ages 16-35 years in Kanagawa, Japan, to complete a Web-based questionnaire. They were recruited through either a social media–based (social networking site, SNS, group) or by conventional methods (conventional group). All participants enrolled were required to fill out and submit their responses through a Web-based questionnaire about their sexual and reproductive health for cervical cancer prevention. Results: Of the 243 participants, 52.3% (127/243) were recruited by SNS, whereas 47.7% (116/243) were recruited by conventional methods. We found no differences between recruitment methods in responses to behaviors and attitudes to sexual and reproductive health survey, although more participants from the conventional group (15%, 14/95) chose not to answer the age of first intercourse compared with those from the SNS group (5.2%, 6/116; P=.03). Conclusions: No differences were found between recruitment methods in the responses of young Japanese women to a Web–based sexual and reproductive health survey.
Journal of Medical Internet Research

Using Mobile Sensing to Test Clinical Models of Depression, Social Anxiety, State Affect, and Social Isolation Among College Students

Background: Research in psychology demonstrates a strong link between state affect (moment-to-moment experiences of positive or negative emotionality) and trait affect (eg, relatively enduring depression and social anxiety symptoms), and a tendency to withdraw (eg, spending time at home). However, existing work is based almost exclusively on static, self-reported descriptions of emotions and behavior that limit generalizability. Despite adoption of increasingly sophisticated research designs and technology (eg, mobile sensing using a global positioning system [GPS]), little research has integrated these seemingly disparate forms of data to improve understanding of how emotional experiences in everyday life are associated with time spent at home, and whether this is influenced by depression or social anxiety symptoms. Objective: We hypothesized that more time spent at home would be associated with more negative and less positive affect. Methods: We recruited 72 undergraduate participants from a southeast university in the United States. We assessed depression and social anxiety symptoms using self-report instruments at baseline. An app (Sensus) installed on participants’ personal mobile phones repeatedly collected in situ self-reported state affect and GPS location data for up to 2 weeks. Time spent at home was a proxy for social isolation. Results: We tested separate models examining the relations between state affect and time spent at home, with levels of depression and social anxiety as moderators. Models differed only in the temporal links examined. One model focused on associations between changes in affect and time spent at home within short, 4-hour time windows. The other 3 models focused on associations between mean-level affect within a day and time spent at home (1) the same day, (2) the following day, and (3) the previous day. Overall, we obtained many of the expected main effects (although there were some null effects), in which higher social anxiety was associated with more time or greater likelihood of spending time at home, and more negative or less positive affect was linked to longer homestay. Interactions indicated that, among individuals higher in social anxiety, higher negative affect and lower positive affect within a day was associated with greater likelihood of spending time at home the following day. Conclusions: Results demonstrate the feasibility and utility of modeling the relationship between affect and homestay using fine-grained GPS data. Although these findings must be replicated in a larger study and with clinical samples, they suggest that integrating repeated state affect assessments in situ with continuous GPS data can increase understanding of how actual homestay is related to affect in everyday life and to symptoms of anxiety and depression.
Journal of Medical Internet Research

Identifying Topics for E-Cigarette User-Generated Contents: A Case Study From Multiple Social Media Platforms

Background: Electronic cigarette (e-cigarette) is an emerging product with a rapid-growth market in recent years. Social media has become an important platform for information seeking and sharing. We aim to mine hidden topics from e-cigarette datasets collected from different social media platforms. Objective: This paper aims to gain a systematic understanding of the characteristics of various types of social media, which will provide deep insights into how consumers and policy makers effectively use social media to track e-cigarette-related content and adjust their decisions and policies. Methods: We collected data from Reddit (27,638 e-cigarette flavor-related posts from January 1, 2011, to June 30, 2015), JuiceDB (14,433 e-juice reviews from June 26, 2013 to November 12, 2015), and Twitter (13,356 “e-cig ban”-related tweets from January, 1, 2010 to June 30, 2015). Latent Dirichlet Allocation, a generative model for topic modeling, was used to analyze the topics from these data. Results: We found four types of topics across the platforms: (1) promotions, (2) flavor discussions, (3) experience sharing, and (4) regulation debates. Promotions included sales from vendors to users, as well as trades among users. A total of 10.72% (2,962/27,638) of the posts from Reddit were related to trading. Promotion links were found between social media platforms. Most of the links (87.30%) in JuiceDB were related to Reddit posts. JuiceDB and Reddit identified consistent flavor categories. E-cigarette vaping methods and features such as steeping, throat hit, and vapor production were broadly discussed both on Reddit and on JuiceDB. Reddit provided space for policy discussions and majority of the posts (60.7%) holding a negative attitude toward regulations, whereas Twitter was used to launch campaigns using certain hashtags. Our findings are based on data across different platforms. The topic distribution between Reddit and JuiceDB was significantly different (P<.001), which indicated that the user discussions focused on different perspectives across the platforms. Conclusions: This study examined Reddit, JuiceDB, and Twitter as social media data sources for e-cigarette research. These mined findings could be further used by other researchers and policy makers. By utilizing the automatic topic-modeling method, the proposed unified feedback model could be a useful tool for policy makers to comprehensively consider how to collect valuable feedback from social media. Journal of Medical Internet Research

The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review

Background: When parents of young children with special health care needs (CSHCN) receive their child’s diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child’s immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them. Objective: The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents. Methods: A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN. Results: The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States. Conclusions: Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child.
Journal of Medical Internet Research

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

Background: Efforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships. Objective: Our objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families. Methods: The Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members. Results: The PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group. Conclusions: The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.
Journal of Medical Internet Research

Exploring the Relationship Between Online Social Network Site Usage and the Impact on Quality of Life for Older and Younger Users: An Interaction Analysis

Background: Analyzing content generated by users of social network sites has been shown to be beneficial across a number of disciplines. Such analysis has revealed the precise behavior of users that details their distinct patterns of engagement. An issue is evident whereby without direct engagement with end users, the reasoning for anomalies can only be the subject of conjecture. Furthermore, the impact of engaging in social network sites on quality of life is an area which has received little attention. Of particular interest is the impact of online social networking on older users, which is a demographic that is specifically vulnerable to social isolation. A review of the literature reveals a lack of knowledge concerning the impact of these technologies on such users and even less is known regarding how this impact varies across different demographics. Objective: The objective of our study was to analyze user interactions and to survey the attitudes of social network users directly, capturing data in four key areas: (1) functional usage, (2) behavioral patterns, (3) technology, and (4) quality of life. Methods: An online survey was constructed, comprising 32 questions. Each question directly related to a research question. Respondents were recruited through a variety of methods including email campaigns, Facebook advertisements, and promotion from related organizations. Results: In total, data was collected from 919 users containing 446 younger and 473 older users. In comparison to younger users, a greater proportion of older users (289/473, 61.1% older vs 218/446, 48.9% younger) (P<.001) stated that Facebook had either a positive or huge impact on their quality of life. Furthermore, a greater percentage of older users strongly agreed that Facebook strengthened their relationship with other people (64/473, 13.5% older vs 40/446, 9.0%younger) (P=.02). In comparison to younger users, a greater proportion of older users had more positive emotions—classified as slightly better or very good—during their engagement with Facebook (186/473, 39.3% older vs 120/446, 26.9% younger) (P<.001). Conclusions: The results reveal that despite engaging at considerably lower rates with significantly fewer connections, older users gain a greater quality-of-life benefit. Results disclose how both cohorts vary in their use, interactions, and rationale for engaging with Facebook. Journal of Medical Internet Research

Professional Use of Social Media by Pharmacists: A Qualitative Study

Background: Social media is frequently used by consumers and health care professionals; however, our knowledge about its use in a professional capacity by pharmacists is limited. Objective: Our aim was to investigate the professional use of social media by pharmacists. Methods: In-depth semistructured interviews were conducted with practicing pharmacists (N=31) from nine countries. Interviews were recorded, transcribed verbatim, and thematically analyzed. Results: Wikipedia, YouTube, and Facebook were the main social media platforms used. Professional use of social media included networking with peers, discussion of health and professional topics, accessing and sharing health and professional information, job searching, and professional promotion. Wikipedia was the participants’ first choice when seeking information about unfamiliar topics, or topics that were difficult to search for. Very few pharmacy-related contributions to Wikipedia were reported. YouTube, a video-sharing platform, was used for self-education. University lectures, “how-to” footage, and professionally made videos were commonly watched. No professional contribution was made to YouTube. Facebook, a general social networking site, was used for professional networking, promotion of achievements, and job advertisements. It also afforded engagement in professional discussions and information sharing among peers. Conclusions: Participants used social media in a professional capacity, specifically for accessing and sharing health and professional information among peers. Pharmacists, as medicines experts, should take a leading role in contributing to health information dissemination in these user-friendly virtual environments, to reach not only other health care professionals but also health consumers.
Journal of Medical Internet Research

Program Use and Outcome Change in a Web-Based Trauma Intervention: Individual and Social Factors

Background: Insight into user adherence to Web-based intervention programs and into its relationship to intervention effect is needed. Objective: The objective of this study was to examine use of a Web-based self-help intervention program, the Chinese version of My Trauma Recovery (CMTR), among Chinese traumatized individuals, and to investigate the relationship between program use and user characteristics before the intervention and change in outcomes after the intervention and at 3-months’ follow-up. Methods: The sample consisted of 56 urban survivors of different trauma types and 90 rural survivors of the 2008 Sichuan earthquake, who used the CMTR in 1 month on their own or guided by volunteers in a counseling center. Predictors were demographics (sex, age, highest education, marital status, and annual family income), health problems (trauma duration, posttraumatic symptoms, and depression), psychological factors (coping self-efficacy), and social factors (social functioning impairment and social support). Program use was assessed by general program usage (eg, number of visiting days) and program adherence (eg, webpages completed in modules). Outcome measures were the Posttraumatic Diagnostic Scale (PDS), Symptom Checklist 90-Depression (SCL-D), Trauma Coping Self-Efficacy scale (CSE), Crisis Support Scale (CSS), and Social Functioning Impairment questionnaire (SFI) adopted from the CMTR. Results: (1) Program use: rural participants had a larger total number of visiting days (F1,144=40.50, P<.001) and visited more program modules in 1 month (χ23=73.67, P<.001) than urban participants. (2) Predictors and program use: total number of visiting days was correlated with CSS at pretest (r=.22, P=.009), and total number of completed webpages was associated with SFI at pretest (r=.19, P=.02). Number of webpages completed in modules was correlated with all demographic, disease severity, psychological, and social factors at pretest. (3) Program use and outcomes change: in general, use of the triggers and self-talk modules showed a consistent positive association with improvement in PDS, SCL-D, SFI, and CSE. The relaxation module was associated with positive change in PDS, but with negative change in CSS and SFI. The professional help module was associated with positive change in SCL-D, but its use on the first day was associated with negative change in CSS and CSE. The unhelpful coping module was associated with negative change in SFI. The mastery tools module showed a consistent association with negative change in PDS and SCL-D. Conclusions: These findings suggest that both individual (eg, demographic, health problems, psychological) and social factors (eg, social functioning, social support) should be considered when delivering Web-based interventions, particularly in collectivist cultures. Specific program adherence indicators (eg, webpages completed in each module, activity types completed), rather than general program usage indicators (eg, total number or time of visiting), should be developed to examine the effectiveness of various program modules or elements. Clinical Trial: Australian New Zealand Clinical Trials Registry: ACTRN12611000951954; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=343399 (Archived by WebCite at http://www.webcitation.org/6G7WyNODk) Journal of Medical Internet Research

Follow #eHealth2011: Measuring the Role and Effectiveness of Online and Social Media in Increasing the Outreach of a Scientific Conference

Background: Social media promotion is increasingly adopted by organizers of industry and academic events; however, the success of social media strategies is rarely questioned or the real impact scientifically analyzed. Objective: We propose a framework that defines and analyses the impact, outreach, and effectiveness of social media for event promotion and research dissemination to participants of a scientific event as well as to the virtual audience through the Web. Methods: Online communication channels Twitter, Facebook, Flickr, and a Liveblog were trialed and their impact measured on outreach during five phases of an eHealth conference: the setup, active and last-minute promotion phases before the conference, the actual event, and after the conference. Results: Planned outreach through online channels and social media before and during the event reached an audience several magnitudes larger in size than would have been possible using traditional means. In the particular case of eHealth 2011, the outreach using traditional means would have been 74 attendees plus 23 extra as sold proceedings and the number of downloaded articles from the online proceedings (4107 until October 2013). The audience for the conference reached via online channels and social media was estimated at more than 5300 in total during the event. The role of Twitter for promotion before the event was complemented by an increased usage of the website and Facebook during the event followed by a sharp increase of views of posters on Flickr after the event. Conclusions: Although our case study is focused on a particular audience around eHealth 2011, our framework provides a template for redefining “audience” and outreach of events, merging traditional physical and virtual communities and providing an outline on how these could be successfully reached in clearly defined event phases.
Journal of Medical Internet Research