The quality of informational social support in online health communities: A content analysis of cancer-related discussions.

Objective: Informational social support is one of the main reasons for patients to visit online health communities (OHCs). Calls have been made to investigate the objective quality of such support in the light of a worrying number of inaccurate online health-related information. The main aim of this study is to conceptualize the Quality of Informational Social Support (QISS) and develop and test a measure of QISS for content analysis. A further aim is to investigate the level of QISS in cancer-related messages in the largest OHC in Slovenia and examine the differences among various types of discussion forums, namely, online consultation forums, online support group forums, and socializing forums. Methods: A multidimensional measurement instrument was developed, which included 20 items in a coding scheme for a content analysis of cancer-related messages. On a set of almost three million posts published between 2015 and 2019, a machine-learning algorithm was used to detect cancer-related discussions in the OHC. We then identified the messages providing informational social support, and through quantitative content analysis, three experts coded a random sample of 403 cancer-related messages for the QISS. Results: The results demonstrate a good level of interrater reliability and agreement for a QISS scale with six dimensions, each demonstrating good internal consistency. The results reveal large differences among the social support, socializing, and consultation forums, with the latter recording significantly higher quality in terms of accuracy (M = 4.48, P < .001), trustworthiness (M = 4.65, P < .001), relevance (M = 3.59, P < .001), and justification (M = 3.81, P = .05) in messages providing informational social support regarding cancer-related issues. Conclusions: This study provides the research field with a valid tool to further investigate the factors and consequences of varying quality of information exchanged in supportive communication. From a practical perspective, OHCs should dedicate more resources and develop mechanisms for the professional moderation of health-related topics in socializing forums and thereby suppress the publication and dissemination of low-quality information among OHC users and visitors.

Collective Empowerment in Online Health Communities: Scale Development and Empirical Validation.

BACKGROUND: The role of online health communities (OHCs) in patient empowerment is growing and has been increasingly studied in recent years. Research has focused primarily on individualistic conception of patients' empowerment, with much less attention paid to the role of OHCs in the development of patients' collective empowerment. Although OHCs have immense potential for empowerment that goes beyond the individual, the concept and scale of collective empowerment in OHCs have not yet been developed or validated. OBJECTIVE: This study aimed to develop an instrument for measuring collective empowerment in online health communities (CE-OHC) and to test its quality by investigating its factorial structure, reliability, construct validity, and predictive validity. METHODS: The CE-OHC scale was developed according to a strict methodology for developing valid and reliable scales. An initial set of 20 items was first tested in the pilot study conducted in 2016 using a sample of 280 registered users of Slovenia's largest OHC. A refined version with 11 items was tested in the main study conducted in 2018 on a random sample of 30,000 registered users of the same OHC. The final sample comprised 784 users. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were used to investigate the factorial structure, discriminant validity, and convergent validity of the scale. Cronbach alpha coefficient was used to determine the CE-OHC scale's internal consistency. To establish the predictive validity, ordinary least squares regression was performed to test the role of CE-OHC in users' civic participation. RESULTS: The EFA resulted in a two-factor solution, and the two factors-knowledge of resources and resource mobilization for collective action-together explain 63.8% of the variance. The second-order CFA demonstrated a good fit to the data (root mean square error of approximation=0.07) and the scale had a good internal consistency (alpha=.86). Although evidence of the scale's convergent validity was partially provided, discriminant validity of the scale remained unconfirmed. Overall, CE-OHC was confirmed to be a predictor of users' civic participation, but the influence was somewhat weak and inconsistent across two subscales. CONCLUSIONS: The proposed CE-OHC scale is a reliable and relatively valid instrument and serves as a good baseline to advance the measurement of collective empowerment in OHC contexts. This is the first scale developed for this purpose, and future research should focus on the development of a clear nomological network of the collective empowerment construct in relation to the OHC settings.

Ill Literates or Illiterates? Investigating the eHealth Literacy of Users of Online Health Communities.

BACKGROUND: Electronic health (eHealth) literacy is an important skill that allows patients to navigate intelligibly through the vast, often misleading Web-based world. Although eHealth literacy has been investigated in general and specific demographic populations, it has not yet been analyzed on users of online health communities (OHCs). Evidence shows that OHCs are important Web 2.0 applications for patients for managing their health, but at the same time, warnings have been expressed regarding the quality and relevance of shared information. No studies exist that investigate levels of eHealth literacy among users of OHCs and differences in eHealth literacy between different types of users. OBJECTIVE: The study aimed to investigate eHealth literacy across different types of users of OHCs based on a revised and extended eHealth literacy scale (eHEALS). METHODS: The study was based on a cross-sectional Web survey on a simple random sample of 15,000 registered users of the most popular general OHC in Slovenia. The final sample comprised 644 users of the studied OHC. An extended eHEALS (eHEALS-E) was tested with factor analytical procedures, whereas user types were identified with a hierarchical clustering algorithm. The research question was analyzed with analysis of variance (ANOVA) procedure and pairwise comparison tests. RESULTS: Factor analysis of the revised and extended eHEALS revealed six dimensions: awareness of sources, recognizing quality and meaning, understanding information, perceived efficiency, validating information, and being smart on the Net. The factor solution demonstrates a good fit to the data (root mean square error of approximation [RMSEA]=.059). The most developed dimension of eHEALS-E is awareness of different Internet sources (mean=3.98, standard deviation [SD]=0.61), whereas the least developed is understanding information (mean=3.11, SD=0.75). Clustering resulted in four user types: active help-seekers (48.3%, 311/644), lurkers (31.8%, 205/644), core relational users (16.9%, 109/644), and low-engaged users (3%, 19/644). Analysis of the research question showed statistically significant differences among user types across all six dimensions of eHEALS-E. Most notably, core relational users performed worse than lurkers on the validating information dimension (P=.01) and worse than active help-seekers on the being smart on the Net dimension (P=.05). Active help-seekers have the highest scores in all dimensions of the eHEALS-E, whereas low-engaged users have statistically significantly lower scores on all dimensions of the eHEALS-E in comparison with the other groups. CONCLUSIONS: Those who are looking for advice and support in OHCs by making queries are well equipped with eHealth literacy skills to filter potential misinformation and detect bad advice. However, core relational users (who produce the most content in OHCs) have less-developed skills for cross-validating the information obtained and navigating successfully through the perils of the online world. Site managers should monitor their activity to avoid the spread of misinformation that might lead to unhealthy practices.

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.

Exploring the benefits and challenges of health professionals' participation in online health communities: Emergence of (dis)empowerment processes and outcomes.

BACKGROUND: Various online applications and service has led to the development of online health communities (OHCs), which in addition to the peer-to-peer communication offer patients and other users also interaction with health professionals. While the benefits and challenges of patients and other users' participation in OHCs have been extensively studied, a thorough examination of how health professionals as moderators (i.e., those who provide clinical expertise to patients and other users in OHCs) experience participation in OHCs is lacking. OBJECTIVE: The aim of this study is to explore the main benefits and challenges of health professional moderators' participation in the OHCs. METHODS: The study undertakes an exploratory qualitative study, with in-depth semi-structured interviews with health professional moderators (n=7) participating in the largest OHC in Slovenia, Med.Over.Net. The data was analysed using inductive thematic analysis approach and principles of grounded theory. RESULTS: Four themes of health professional moderators' experiences were identified: (a) benefits of addressing OHC users' health-related needs, (b) challenges of addressing OHC users' health-related needs, (c) health professional moderators' benefits, and (d) health professional moderators' challenges. CONCLUSIONS: This small study demonstrates that health professional participating in OHCs as moderators perceive themselves as facilitators of patients and other OHC's users empowering processes and outcomes, in which OHC's users improve their health literacy, develop skills, expand their social support, and gain other important resources necessary when dealing with health-related issues. Health professional moderator's role, however, also involves several duties, responsibilities and limitations that are often experienced as difficulties in providing patients and other users with adequate counselling and online medical service. OHCs also represent an important terrain for personal and professional empowerment of health professional moderators, although the presence of disempowering processes also needs to be noted.

Perceived quality of conversations in online communities: conceptual framework, scale development, and empirical validation.

Conversations among online community members as a form of everyday, unconstrained, flexible, and spontaneous communication are important for developing a sense of community, sustainability of online communities, construction of identity, public sphere, and for creating and maintaining offline taken-for-granted basic structures of everyday life. While the lack of qualities of online conversations in online communities is often discussed and researched, we argue that its positive sides should also be conceptualized and become the subject of quantitative empirical research. The purpose of this paper is to introduce the concept and scale of perceived quality of online conversations and inspect the psychometric properties of the proposed scale in terms of content and convergent, discriminant, and criterion validity and reliability. The paper presents a five-factor structure of the quality of conversation scale, which is tested for its quality on a sample of 1,276 online community participants. Confirmatory factor analysis supports the proposed multidimensional structure, while correlational and regression analyses demonstrate good levels of convergent, discriminant and criterion validity. The paper suggests several refinements of the measurement instrument, and concludes with the usefulness of the introduced scale for the research and understanding of the online community phenomenon.