Tweeting Zebras: Social Networking and Relation in Rare Disease Advocacy

This article applies the lens of genre to the social media advocacy of three patient-activists—self-identified “zebras” whose rarely diagnosed conditions are frequently comorbid—who, through performing consistent genre moves, and using the capabilities of social networking to translate personal experiences into public discourse, amplify visibility, and normalize their voices as collective advocacy. Ultimately, through networked communication, these patient-activists perform emergent connections between their conditions outside of the traditional legitimization networks of biomedicine with the aim of gaining legitimacy in public and clinical settings. </jats:p

“The City Residents Do Not Get Involved”: Understanding Barriers to Community Participation in a Small Texas Boomtown

Background: Professional communication researchers have engaged communities through community research and interventions, such as town halls, charettes, and participatory design work. Such interventions rely on community members who are willing to get involved, voicing their perspectives, and engaging in productive dialogue. Yet, some communities do not have these precursor conditions for intervention: they face significant social barriers that make such interventions unlikely to succeed. In an interview- and document-based study, we examine the social barriers described by interviewees in “Permia,” a small town in the Texas Permian Basin region. In contrast to the five other communities we studied, Permia participants demonstrate little readiness to engage in community dialogue. We explore how Permia interviewees made sense of unwillingness to participate in its public life, how their understandings contrasted with the other communities we investigated, and how this research might guide professional communicators as they plan future community-based interventions. Literature review: We review the professional communication research on community interventions as well as relevant sociological literature on boomtowns. Research questions: 1. How do community leaders understand their community heritage as constraining or enabling development? 2. Where do community leaders and members see potential for change and growth in community development? Where do they see barriers, threats, and hard choices? 3. How do community leaders describe the relations among community development stakeholders? How do they describe expectations and trust among them on interpersonal, intergroup, and interorganizational levels? Research methodology: We collected documents and statistics about six small Texas towns, then interviewed community leaders about the towns’ advantages and challenges. Based on those interviews, we collected further documents. We analyzed the data using deductive and inductive coding, as well as narrative analysis. Results/discussion: Through coding, we determined that interviewees saw Permia’s residents as unwilling to engage in deliberations in traditional forums such as city council meetings, and that their explanations for this unwillingness fell into three categories of barriers: distrust of institutions, dwindling personal ties, and lack of moral expectations for residents to engage in community dialogue. These three categories contrast with the other communities we studied. Through narrative analysis, we identify stories that were told by the interviewees to explain how these barriers developed in Permia. Conclusion: We conclude by discussing how professional communicators might survey barriers to community dialogue. Such surveys can help professional communicators choose a pathway for intervention in their community projects.IC2 Institut

Relationships among Commercial Biases and Author Conflicts of Interest in Biomedical Publishing

Recently, concerns have been raised over the potential impacts of commercial biases on editorial practices in biomedical publishing. Specifically, it has been suggested that commercial biases may make editors more open to publishing articles with author conflicts of interest (aCOI). Using a data set of 128,781 articles published in 159 journals, we evaluated the relationships among commercial publishing biases and reported author conflicts of interest. The 159 journals were grouped according to commercial biases (reprint services, advertising revenue, and ownership by a large commercial publishing firm). 30.6% (39,440) of articles were published in journals showing no evidence of commercial publishing biases. 33.9% (43,630) were published in journals accepting advertising and reprint fees; 31.7% (40,887) in journals owned by large publishing firms; 1.2% (1,589) in journals accepting reprint fees only; and 2.5 % (3,235) in journals accepting only advertising fees. Journals with commercial biases were more likely to publish articles with aCOI (9.2% (92/1000) vs. 6.4% (64/1000), p = 0.024). In the multivariate analysis, only a journal’s acceptance of reprint fees served as a significant predictor (OR = 2.81 at 95% CI, 1.5 to 8.6). Shared control estimation was used to evaluate the relationships between commercial publishing biases and aCOI frequency in total and by type. BCa-corrected mean difference effect sizes ranged from -1.0 to 6.1, and confirm findings indicating that accepting reprint fees may constitute the most significant commercial bias. The findings indicate that concerns over the influence of industry advertising in medical journals may be overstated, and that accepting fees for reprints may constitute the largest risk of bias for editorial decision-making.</jats:p

Relationships among commercial practices and author conflicts of interest in biomedical publishing.

Recently, concerns have been raised over the potential impacts of commercial relationships on editorial practices in biomedical publishing. Specifically, it has been suggested that certain commercial relationships may make editors more open to publishing articles with author conflicts of interest (aCOI). Using a data set of 128,781 articles published in 159 journals, we evaluated the relationships among commercial publishing practices and reported author conflicts of interest. The 159 journals were grouped according to commercial biases (reprint services, advertising revenue, and ownership by a large commercial publishing firm). 30.6% (39,440) of articles were published in journals showing no evidence of evaluated commercial publishing relationships. 33.9% (43,630) were published in journals accepting advertising and reprint fees; 31.7% (40,887) in journals owned by large publishing firms; 1.2% (1,589) in journals accepting reprint fees only; and 2.5% (3,235) in journals accepting only advertising fees. Journals with commercial relationships were more likely to publish articles with aCOI (9.2% (92/1000) vs. 6.4% (64/1000), p = 0.024). In the multivariate analysis, only a journal's acceptance of reprint fees served as a significant predictor (OR = 2.81 at 95% CI, 1.5 to 8.6). Shared control estimation was used to evaluate the relationships between commercial publishing practices and aCOI frequency in total and by type. BCa-corrected mean difference effect sizes ranged from -1.0 to 6.1, and confirm findings indicating that accepting reprint fees may constitute the most significant commercial bias. The findings indicate that concerns over the influence of industry advertising in medical journals may be overstated, and that accepting fees for reprints may constitute the largest risk of bias for editorial decision-making