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

Abstract

BackgroundThe 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.ObjectiveThis 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.MethodsThe 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.ResultsThe 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.ConclusionsThe 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.

Online Communities as a Driver for Patient Empowerment: Systematic Review

“…In some papers that were included, the overall outcomes were discussed as leading to collective empowerment, where the aim was to gain collective knowledge within a community in order to make changes to health care services, systems, or ways of financing health care. Therefore, this presents opportunities for online communities to support patient progress to specific levels of empowerment [ 78 ]. Collective empowerment through online communities has been a recurring topic of interest in previous research regarding empowerment of employee, individual or consumer motivation to create change within an organization, community or business [ 79 - 81 ] but is not explored as often in online communities for health care purposes [ 78 ].…”

Predicting Quality of Life among Mothers in an Online Health Community for Children with Type 1 Diabetes

“…The Collective Empowerment in Online Health Communities Scale was used to measure OHCE [ 25 ]. The scale comprises two subscales: knowledge for resources (1 to 6 items) and resource mobilization for group action (7 to 11 items).…”

Collective empowerment of an online patient community: conceptualizing process dynamics using a multi-method qualitative approach

“… Empirical approach Analysis of 530,055 words on a thread about humor in an online forum for English cancer patients Highlights the empowering potential for humor: • Makes it possible to discuss taboo topics • Builds rapport among members • Bonds the community • Affirms the collective power of resistance to a sometimes uncontrollable disease • Gives the feeling of taking control and reacting freely Humor is enabled by the relative anonymity of virtual communities and their constant accessibility. Atanasova and Petric [ 47 ] Develop a measurement instrument to evaluate the collective empowerment of online patient communities and then test its validity Empirical approach Pilot study with 280 members of an online patient community in Slovenia and then with about 30,000 members Creation of a measurement scale for collective empowerment along two dimensions: • Knowledge of resources and methods used to impact change • The mobilization of these resources for collective action Also related: • The sense of virtual community • Engagement in community organization • Intensity of participation • Civic participation • Offline emotional support …”

“…Those who choose to join these communities are ordinary citizens facing a chronic illness, whether their own or that of a loved one. By joining a patient coalition, they feel they can better resolve their health problems and be in a better position to transform health and social institutions as a group [ 47 ].…”

“…Self-deprecation can help lift taboos, create a feeling of belonging through certain code words, and bring the community together. To respond to the need for psychometric research, Atanasova and Petric [ 47 ] have built one of the first scales to evaluate collective empowerment of online patient communities, using two main dimensions and five complementary dimensions. The first dimension refers to drawing upon individual resources to collectively initiate change.…”